Children’s Organ Transplant Association (COTA) Assists 1,300th Patient
Bloomington, Indiana – October 14, 2008 – The Children’s Organ Transplant Association (COTA) is making a miracle … for the 1,300th time. Seventeen-year-old Kyle Hicks of Wichita, Kansas, is the 1,300th patient to begin work with COTA. Kyle needs a bone marrow transplant to save his life. But, like so many of the 1,299 COTA children before him, money stands in the way.
Kyle has a severe form of a skin disease called Recessive Dystrophic EB (RDEB). He was born with a blister on his lip. Minutes following his birth, fingerprint-shaped blisters formed on his foot where a nurse had just taken blood. For 17 years, Kyle has blistered. Large areas of his body are often devoid of skin. He is in constant pain. But, according to those who know him, Kyle never complains.
“My skin is very fragile, kind of like the wings of a butterfly, and so it constantly tears. When it tears, a blister forms and then turns into a painful sore. Each day my mom has to wrap my body in bandages from my toes to my shoulders to keep my sores clean and to prevent infection,” Kyle explains. “Except for this awful disease, I am a normal teenager … I play video games, do homework, watch television and listen to music. But while my high school friends are dreaming about college, my dream is to get a bone marrow transplant.”
A year ago, Kyle read about a doctor in Minnesota who was treating two boys with RDEB by performing a bone marrow transplant. Kyle did a Google search, found the doctor’s email, and sent him a message asking if he would consider Kyle as his next RDEB patient. Dr. John Wagner at Fairview Children’s Hospital at the University of Minnesota emailed Kyle the next day and they started an electronic exchange. After several months, Dr. Wagner asked to speak to Kyle’s parents. Just a few weeks later they met in person, and Dr. Wagner agreed to treat Kyle.
The problem? Kyle’s life-saving bone marrow transplant will cost at least $500,000 and both of the family’s insurance companies have denied the procedure because they consider it ‘experimental’.
“Just when I was about to give up, my mom discovered the Children’s Organ Transplant Association (COTA). WOW! COTA’s help has been awesome and my COTA team of volunteers is working non-stop to raise money for my bone marrow transplant, which really is my second chance at life,” Kyle said.
According to Kyle, “My mom liked COTA from the start because all the donations are tax deductible for the donor, and the donated funds are held in a safe account for transplant-related expenses. COTA taught my team how to fundraise and gave me my own website, www.COTAforKyleH.com. The website is amazing. I love to make entries in my COTA online journal, and I love to read the comments from people all over the country who write to me using my COTA guestbook.”
Kyle’s COTA volunteers in Wichita, Kansas, have already raised nearly $170,000. But time is of the essence for Kyle and his COTA team of volunteers. At age 17, Kyle only weighs 52 pounds and he is barely four-feet tall. Eating is sometimes difficult because of the blisters in his mouth and throat. Nutrients are not easily digested because of his intestinal scarring. Kyle is constantly fighting anemia. And, most RDEB kids die by the age of 30 with skin cancer or complications of the disease.
“Giving Hope … Making Miracles is more than a slogan for the Children’s Organ Transplant Association -- it is a guiding vision,” said Rick Lofgren, President of COTA. “Kyle’s transplant journey is a remarkable story of courage and determination. This teenager’s spirit and intense will to overcome this disease are an incredible catalyst for his Kansas-based team of fundraisers, his friends, and for all of us at COTA.”
“COTA was founded in 1986 when one child from Bloomington, Indiana, needed a liver transplant to survive,” said Lofgren. “The community rallied around this child’s family and raised more than $100,000 in two months’ time. Sadly, that little boy died before a liver became available, but their efforts were definitely not in vain – especially when there is a possibility we can help to give our 1,300th patient, Kyle Hicks, a second chance at life.”
Kyle writes about being pain-free, and being able to live a long life. He wishes for a day when he can be independent. Kyle wants to be a research scientist so he can be the person who finds a cure for his awful disease. Kyle prays about getting a bone marrow transplant. He is hoping for a miracle.
COTA Reports Record Number of Children Successfully Transplanted
Bloomington, Indiana -- September 29, 2008 -- The Children’s Organ Transplant Association (COTA) has announced that nearly 80 COTA patients were successfully transplanted during their 2008 fiscal year that ended June 30th. That brings the total number of COTA patients transplanted to more than 870 in the 23 years COTA has served transplant-needy families.
“COTA’s unwavering commitment to giving hope and making miracles for each patient family is underscored by the organization’s nearly 100,000 volunteers and contributors who, during the past 23 years, have generously donated their time and their money to COTA,” said Rick Lofgren, COTA President and CEO. “These volunteers and contributors are indeed heroes; they are our Miracle Makers.”
An important benchmark for any non-profit organization is the percent of expenditures used for program-related activities. In the past year, COTA reported that 89% of COTA’s operational expenses were directed toward patient care and organ, tissue and marrow donor education program activities.
“Giving Hope … Making Miracles is more than a slogan for the Children’s Organ Transplant Association -- it is a guiding vision,” said T. Michael Ford, COTA’s Chairman of the Board. “On behalf of COTA’s Board of Directors, it is my pleasure to report that during fiscal year 2008 more than $3.7 million was raised for COTA patients. COTA’s Board of Directors is committed to ensuring that every dollar donated for our patients’ benefit is used for patient care.”
Over the past 23 years, COTA has become the premier organization providing fundraising assistance to families facing a life-saving transplant by assisting some 1,300 patients. Families from throughout the country, representing every ethnic, economic, religious and social background, have worked with COTA. Their volunteers and supporters have donated nearly $50 million to assist with transplant-related expenses.
More than two decades ago, when COTA was founded, most donations were made through cash or checks. In fiscal year 2008, COTA’s website (www.cota.org) became the organization’s fastest growing method of raising funds with nearly $700,000 in online donations being contributed electronically by 4,500 donors.
Since COTA’s founding in 1986, two of COTA’s hallmarks are that patients are not charged for COTA’s services and every dollar contributed in honor, or in memory, of COTA patients is used for transplant-related expenses.
“In addition, COTA augments the funds our volunteers raise by providing a challenge grant of up to $10,000,” said Lofgren. “This COTA program has distributed more than $2,500,000 to COTA fundraising campaigns since 2000.”
“COTA was founded in 1986 when one child from Bloomington, Indiana, needed a liver transplant to survive,” said Lofgren. “The community rallied around this child’s family and raised more than $100,000 in two months’ time. Sadly, that little boy died before a liver became available, but their efforts were not in vain. I expect we will be celebrating another milestone when we announce the name of our 1300th patient in the coming weeks,” said Lofgren.
Along the way COTA’s team of professional and these families have shared tears, conquered huge obstacles, hoped, and together, have celebrated more than two decades worth of miracles.
COTA Hispanic Teen Receives Life-Saving Transplant:
Community Fundraising and Awareness Efforts Result In
More Than 400 Individuals Added to the Bone Marrow Registry
Bloomington, Indiana – August 25, 2008 – One Texas family knows first hand about the critical shortage of Hispanic organ and tissue donors. But this family decided to do something about it. They focused their community not only on raising funds to pay for a life-saving transplant, but also on increasing the number of Hispanics included in the nation’s bone marrow donor registry.
The morning of October 14, 2006, will be forever etched in the memories of the González family of The Woodlands, Texas. It was on that morning when 12-year-old Steven González, Jr. was camping with friends near the Gulf of Mexico and woke up with red dots on his face. Later in the day, Steven took a tumble and received a large gash on his hand, which was then exposed to the water of the Gulf. When his family rushed him to the doctor, they were told that Steven’s platelet and white blood counts were dangerously low, as was his ability to fight infection.
“We will never forget those words that day,” said Mom Rosie González. “Preliminary diagnosis … leukemia. Then the sky opened up over Houston and the streets flooded. It was as if all of creation was sharing our pain. Ten days later, we were told Steven had Acute Myelogenous Leukemia (AML M6 Leukemia), and he had only a two percent chance of survival. But we never gave up hope. ”
Steven’s only hope was a bone marrow transplant. In preparation for the transplant, Steven began his first chemotherapy treatment on Halloween of 2006 at the Children’s Cancer Hospital at M.D. Anderson Cancer Center in Houston, Texas. Just when the González family was starting to think Steven would beat the odds, there came more devastating news. The family’s insurance company would not cover the search for a bone marrow donor for Steven. Without a donor search Steven’s possibility of finding a match, and receiving a second chance at life, was severely reduced.
According to Dad Steven González, Sr., “We were beside ourselves wondering what we would do, and then we heard about the Children’s Organ Transplant Association, COTA, and our hope soared again.”
Within weeks of learning about COTA, the González’s friends and families quickly mobilized and started working to raise the necessary funds to help pay for transplant-related expenses.
Steven’s bone marrow registration drives caused excitement, and not just in his hometown. Over a period of several months, bone marrow drives were held in the Texas cities of Houston, El Paso and San Antonio, as well as in New Jersey, New Mexico and California. According to Steven González, Sr., “We quickly learned the bone marrow registry does not have the needed representation of the Hispanic community. In order to help our son, we had no choice but to work to increase the number of Hispanics in the registry.”
As of February 2008, the National Marrow Donor Program (NMDP) reported that of the 7,000,000 adults registered with NMDP, only 650,000, or less than 10%, are of Hispanic or Latino descent. While more than 3,000 Hispanics received a tissue or organ donation during 2007, the Hispanic community is in desperate need of organ and tissue donors.
According to Steven González, Sr., “The response to Steven’s bone marrow drives was tremendous and resulted in a significant increase in the Hispanic representation on the nation’s bone marrow registry. With COTA’s assistance, and with the dedication of our friends and family, we found Steven a match and provided hope to numerous other Hispanic families who might not have found a match.”
A total of 14 bone marrow registration drives were held in honor of Steven González, and they resulted in more than 400 individuals being added to the bone marrow registry. According to Steven’s COTA Campaign Coordinator Linda Bankerd, “I held a bone marrow drive at work. I don’t know how many people signed up, but I can tell you that many people were touched. I was extremely honored to raise awareness of the critical need of minority bone marrow donors, and I am very thankful to have opened the eyes, minds and hearts of even just one person who signed up as a donor. I will forever be changed after working with COTA and after witnessing Steven fight this battle to find a donor.”
Steven’s Aunt Melanie González coordinated bone marrow drives in New Jersey. She recalls, “It was difficult being so far away from Steven when he needed the help the most. Coordinating bone marrow drives allowed me to feel like I was helping from afar. The truly wonderful thing was I wasn’t just helping my nephew, but other people too.”
Steven found a donor, but from an unexpected source. The parents of two Hispanic baby girls donated their umbilical cord blood to Steven. On February 13, 2007, Steven received his transplant, and his second chance at life. He set many records post-transplant. Steven’s new cells engrafted in just 11 days; Steven was released from isolation in only 12 days; and he was released from the hospital a mere 18 days after receiving the donor cord blood.
According to Steven González, Sr., “Just like any other father, I have a deep desire and need to provide for my family, no matter what the circumstance. When the expenses started to add up for the bone marrow donor search, I truly didn’t know how I was going to be able to provide for my family. COTA enabled the generosity, the prayers and the loving gifts of family and friends to lift us up and to offer financial relief during this time of great need.”
According to Rosie González, “Watching my child face a serious illness is one of the most difficult things I have ever had to go through, but COTA helped in so many ways … by offering financial assistance and by allowing us to keep in communication with our family through Steven’s COTA website. COTA helped make an impossible situation seem a little bit easier.”
Today, Steven is 18 months post-transplant and is living life just like other 14-year-old boys. His family truly believes his diagnosis; his journey to transplant; the community support to help him and his family through COTA, and the effort to add new Hispanics to the National Marrow Donor Registry are all reasons he is thriving today -- to impact lives by telling his story and increasing the country’s awareness of the need.
The Children’s Organ Transplant Association (COTA) Receives
$52,000 from the Carroll Shelby Children’s Foundation
Bloomington, Indiana – August 19, 2008 – The Carroll Shelby Children’s Foundation recently made a $52,000 donation to the Children’s Organ Transplant Association (COTA) during the Automotive Fine Arts Society’s (AFAS) Annual Reception at the Pebble Beach Concours d’Elegance. The funds were raised during the 6th Kids’ Automotive Art Contest, which concluded in April and was hosted by the Carroll Shelby Children’s Foundation, Road & Track and the AFAS. The Foundation matched the $26,000 total raised during the contest, resulting in the $52,000 donation
to COTA.
“It’s an honor to help a fine organization like COTA,” said Carroll Shelby, Founder of the Carroll Shelby Children’s Foundation. “COTA’s fight to promote organ transplants for kids across the country is very close to my heart. I established my foundation 15 years ago to achieve the same goal of providing better lives for youngsters in need.”
Sponsored by Wells Fargo and numerous automotive companies and Road & Track, AFAS Kids’ Automotive Art Contest challenged children to draw or paint the car they would like to drive when they grow up. Money was raised for COTA through contest entry fees and donations.
COTA President Rick Lofgren accepted the donation on behalf of COTA with two COTA post-transplant patients at his side. Two-year-old Christopher Padua of San Francisco, California, received his liver transplant almost one year ago. Thirteen-year-old Myles Nesbitt of Fremont, California, received his kidney transplant nearly five years ago. Both boys are doing great post-transplant; and both boys received a standing ovation, and a lengthy round of applause accompanied by loud crowd cheers at the Carroll Shelby check presentation on Saturday, August 16th.
“The entire COTA family is extremely grateful to the Carroll Shelby Children’s Foundation for helping us to continue giving hope and making miracles for transplant-needy children nationwide,” said Rick Lofgren, President of COTA. “This gift will be used to help our most needy transplant families ensure their children have a second chance at life. Carroll Shelby understands better than most how a life-saving transplant can change a life forever, and we are thankful for his compassion and his commitment to COTA’s miracle-making mission.”
For more information on next year’s Kid’s Automotive Art Contest, visit www.cscf.org or email Carroll Shelby Children’s Foundation Director, Jenni Shreeves, at jenni@cscf.org.
About the Carroll Shelby Children’s Foundation
The Carroll Shelby Children’s Foundation was created by legendary racer and automotive manufacturer Carroll Shelby. After undergoing a successful heart transplant in 1990, he established the Carroll Shelby Children’s Foundation. Thanks to the support of the Shelby Companies, Ford Motor Company and loyal fans worldwide, the Foundation is helping children battle life-threatening illnesses and promoting the importance of organ and tissue donation. More information is available at www.cscf.org.
COTA Saturday Initiative “One Million Miracles”
Creating a Nationwide Network of Partners
Bloomington, Indiana – July 15, 2008 – The Children’s Organ Transplant Association (COTA) is proud to announce that COTA Saturday 2008, scheduled for the third Saturday in September, is attracting a nationwide network of partners who are each collecting one million pennies toward a goal of providing One Million Miracles.
Launched in 2006, COTA Saturday is the vision of a New York volunteer and COTA patient family member Barbara Petula. “As a child, I always felt God had special plans for me. I had to have a purpose, and I looked for that fulfillment most of my adult life. Never in a ‘million’ years did I think it would be to help my own family,” said Barbara Petula, COTA Saturday National Chairperson. “When my niece Samantha became ill, and we later learned that she needed a liver transplant, the need to do something to help became my personal challenge. When I first learned of COTA, I knew my journey had just begun.”
COTA Saturday is designed to give local groups and individuals nationwide a platform to raise awareness for the need for organ and tissue donors, and to raise funds to assist families with their transplant-related expenses. “COTA owes a huge debt of gratitude to Barbara Petula who, as she was helping her niece, decided that she wanted to do something for all children awaiting transplant. Thus, COTA Saturday was born,” said COTA President Rick Lofgren.
According to Barbara Petula, COTA’s One Million Miracles means:
One person can make a difference.
Millions of pennies help save kids’ lives.
Miracles are possible.
Last September, Briton Segler, Service Chair for Trinity University’s Health Care Administration Department (San Antonio, Texas) discovered COTA Saturday after doing a website search. She immediately decided to organize a dodge ball tournament to raise funds and awareness for COTA. On Saturday, September 27th, Briton’s idea really paid off; her tournament raised $500 to help COTA get closer to its goal of making One Million Miracles.
According to Segler, “I chose to help COTA because it is an organization that shares my passion for health care and for helping young people who face life-threatening medical conditions.” Even though Segler is not her organization’s Service Chair this year, she is hopeful the group will do another COTA Saturday event this September.
Middleton High School Key Club (Middleton, Wisconsin) accepted COTA’s challenge and organized an effort to help COTA ‘make miracles’. Members of this Wisconsin Key Club were inspired when a COTA representative presented a workshop at their Key Club Convention several months ago. According to Key Club President Megan Pattarozzi, “Using the spirit of homecoming week, we decided that a penny war might spark some fun amongst the students and teachers, while helping out a great cause. We picked four popular teachers at our school to participate in our contest. Our efforts sparked a lot of interest amongst students and teachers alike and we ended up with a great result … over $500 raised to help COTA make miracles!”
Individuals are also deciding to help COTA give hope and make miracles. A 40-year employee of American Appraisal Associates (Milwaukee, Wisconsin) recently decided to forego the gold watch or wooden rocking chair the company includes on its gift list to recognize its employees’ years of service. Instead, Ed Raether asked his fellow employees to host a COTA fundraising event to help with his granddaughter’s transplant-related expenses. Raether’s granddaughter was born 10 weeks premature and needs a life-saving kidney transplant; her family began working with COTA several months ago.
The result? American Appraisal Associates hosted a hot dog sale and in one afternoon, Raether’s co-workers commemorated his years of service with more than $6,000 raised for transplant-related expenses. However, in addition to what the employees raised, the company’s executive staff pledged $5 for every $1 raised for their personal support of COTA. In total, this effort raised $36,375 to give hope and make a miracle for Ed Raether’s granddaughter.
Currently, COTA is identifying national, regional and local groups, as well as individuals, to participate in COTA Saturday’s 2008 One Million Miracles program. Anyone who wants to learn more about One Million Miracles can go to www.millionmiracles.org. Information and templates for organizing a local COTA Saturday event, or for collecting and donating pennies, can be found on the website.
Since 1986, COTA has raised more than $48 million and assisted more than 1,300 children and adults who required life-saving organ, bone marrow, cord blood or stem cell transplants. The inaugural COTA Saturday was celebrated nationwide September 23, 2006, and raised more than $100,000.
“Our goal is to assure that no child is denied a life-saving transplant due to a lack of funds,” said Rick Lofgren, COTA President. “COTA Saturday is a wonderful way to celebrate the hallmarks of this organization -- all money raised through a local COTA fundraising campaign is used for transplant-related expenses and there is no charge for any of our services. To me, One Million Miracles means one day at a time … one penny at a time … one child at a time … one miracle at a time.”
COTA Saturday events also focus on the critical organ and tissue shortage facing our nation. Since 1986, COTA has distributed more than 2,000,000 organ donation registration cards by working with organizations including Optimist International, Kiwanis and The American Legion.
George Taliaferro Open Raises $70,000 To Benefit Children
Bloomington, Indiana – June 4, 2008 – More than 100 golfers hit the links on Monday, June 2nd to help the Children's Organ Transplant Association (COTA) raise awareness and funds to benefit children who need a life-saving transplant. The fun-filled day at the Eagle Pointe Golf Resort in Bloomington, Indiana, raised $70,000 for transplant-related expenses for children throughout the country. Proceeds from the nine George Taliaferro Open for Children golf outings have totaled more than $560,000.
"I am grateful and honored by the outpouring of support of the many fine individuals and organizations who continue to support our event,” stated COTA Board of Directors Chairman Emeritus George Taliaferro. “My prayer is that some day there will be a donor for every child who needs a life-saving organ or bone marrow transplant. After my family, I am most proud of the work I have done to help children and young adults have a second chance at life!"
According to Taliaferro, many Central and Southern Indiana sponsors helped make this event a tremendous success including: Comprehensive Financial Consultants (Presenting Sponsor), David and Bonne Hilliard (Gold Sponsor), Cook Incorporated, Bunger & Robertson, Bloomington Courtyard, GOC Technologies, Dr. Lisa Baker, Monroe Bank and many more.
"We are grateful to George for his enthusiasm and work on this fun and rewarding project. This event is a winner for COTA due to his warmth, generosity and energy," said COTA President Rick Lofgren. “It is through activities like this golf outing that COTA is able to provide services to nearly 1,300 families from throughout the nation.”
A New Heart … A New Start … A Miracle
Preparing for High School Graduation and Planning for College
Bloomington, Indiana – May 22, 2008 – For one Oklahoma teenager, high school graduation is particularly joyful. Just six months ago, he was facing a certain death and now, after a heart transplant, he has a second chance at life.
Chandler West expected his junior year of high school to be tough. He planned a year filled with challenging academics and a myriad of school activities. But as he entered the school year, he suddenly began to tire easily and did not have the energy to participate in the activities he loved. Many times he watched his friends from the sidelines, wondering why he was unable to be involved. It was during his junior year that Chandler and his family learned the reason: the deadly diagnosis of Dilated Cardiomyopathy. Chandler’s only hope was a heart transplant.
As the disease progressed, Chandler was hospitalized several times, including a lengthy stay in the intensive care unit of St. Louis Children’s Hospital in St. Louis, Missouri, to receive a pacemaker. His energy level decreased tremendously, and his ability to live a normal high school teenager life became impossible. As his condition worsened, the transplant team at St. Louis Children’s told him and his family the time had come: They placed Chandler on the transplant waiting list.
That’s when Chandler’s family called the Children’s Organ Transplant Association (COTA) for help with their mounting transplant-related expenses. When asked about the impact COTA has had on her family, Maureen West, Chandler’s Aunt said, “Let’s face it, it’s painful asking for money but we now know the rewards far out weigh any discomfort. My nephew went from being a 16-year-old boy waiting all alone for a heart transplant, to knowing that there was an army of family, friends and total strangers standing behind him. Thank you COTA, for helping us put together our army.”
Chandler received his new heart, and his second chance at life, on December 4, 2007, at St. Louis Children’s Hospital. Two weeks later, he was back home in Oklahoma City, and he returned to his high school to resume his classroom studies in January.
Chandler admits he struggled to keep up with the rigors of his senior year studies, but his determination and drive kept him on top of his coursework and he was able to fulfill all graduation requirements. In addition to his homework, Chandler’s pre- and post-transplant days were also filled with college applications, scholarship forms, interviews, and lots of paperwork.
His hard work and personal motivation paid off.
Chandler will graduate on time with his senior class later this month. He has been accepted at Loyola University in Chicago where he will study science in hopes of one day becoming a doctor himself.
According to Chandler, “Each day I regain more and more strength, and I get closer to living a normal life. Of course, none of this would have been possible without gift from a person whom I will never know – someone who gave his or her life so I could keep living mine. Someone who gave me a new heart … and a new start.”
The Best Mother’s Day Gift … A Daughter’s Second Chance At Life
 |
| Hayley Resk, Liver Transplant Recipient, and her mother, Julie Resk, Living Donor |
Bloomington, Indiana – April 21, 2008 – One Oregon teenager has a special message for her mother this Mother’s Day: Thank You. This teen is thanking her mom for being her living liver donor and for giving her a second chance at life.
Hayley Resk was born on June 2, 1993. Hayley was a very healthy infant and toddler. However, just after her third birthday she was diagnosed with ulcerative colitis following a prolonged episode of diarrhea and weight loss. At the age of four, Hayley was hospitalized with severe anemia, and by the time she was six, she had her spleen removed to control ongoing anemia. In 1999 Hayley was diagnosed with primary sclerosing cholangitis (PSC) -- a chronic liver disease that causes fibrosis and blockage of the bile ducts. No treatment for PSC exists and Hayley’s parents, Jim and Julie Resk, were told Hayley would eventually need a liver transplant to survive.
As the disease progressed, Hayley was hospitalized numerous times for complications including bleeding from esophageal varices (swollen blood vessels), jaundice, and ascites (fluid in her abdomen). Finally, in December 2006, her transplant team at Lucile Packard Children’s Hospital in Stanford, California, placed Hayley on the transplant list.
That’s when Hayley’s parents reached out to the Children’s Organ Transplant Association (COTA) for help. When asked about the impact COTA has had on her family, Julie Resk said, “COTA has meant that our family had an organization working with us – an organization that was willing to guide us through this difficult time in our lives. Everything was scary and all-consuming, and COTA worked with our volunteers to help lift this huge medical financial burden off our shoulders and make this transplant for our daughter a reality.”
Hayley received a portion of her mother’s liver on February 12, 2007. Now, just a year later, Hayley is doing well; has returned to school, and has resumed most of her normal teenager activities – including hanging with her friends, studying marine biology (her passion) and working to save manatees and our oceans. Recently, Hayley thanked her mom on her website (www.COTAforHayleyR.com) for the liver donation and for giving her second chance at life. Here’s her letter to her mom:
Mom,
I don't know if I will ever be able to repay you for what you have done for me. It's been beyond words what this past year has been like for me, but I am going to try and put my feelings on paper.
It seems like a dream of so long ago when I first remember being told I was going to need a liver transplant. It had been discussed, but never put out there so pointedly. At first, I was like, "Okay … just another surgery, right?” But the doctors said there would be a list – a list that I would have to wait on until a liver that matched mine was available. At that point, it wasn't the surgery, or missing school, or the pain, or the recovery that scared me, it was the wait. I couldn't handle the thought of just waiting (in my head, I was hooked up to wires in the hospital), and waiting. I was told of the nearly 100,000 other people on this list, and my heart ached. I knew their pain. Together, we began waiting for someone to save me – to make that selfless decision to donate life.
And then, like a miracle come true, I remember the day you volunteered to be my donor. You didn't need even a second to think about it. You stepped up at that moment; I knew you were/are the best mom on earth. I wish every person on that “transplant list” could be as lucky as I was. I felt safe knowing you were always there for me – and I just knew your liver was going to work, no doubt about it.
After the transplant, the first time I saw you, I exploded with happiness. I was so happy we had both made it through. Since then, I've learned so much through our experience. You've taught me things without even knowing it. I've learned to never, ever give up, and to stay strong. I now know I am brave. You have taught me to love with the greatest of my ability. I hope we can spend this Mother's Day with a nice walk on the beach to celebrate our mother/daughter bond … a bond that saved my life.
Love, Hayley
COTA Receives $75,000 Donation to Help Kids Receive a Second Chance at Life
Bloomington, Indiana – April 1, 2008 – Children in need of a life-saving transplant had a portion of their transplant-related expenses paid by the Children’s Organ Transplant Association (COTA), thanks to a $75,000 contribution from Operation Kids, an international children’s charity based in Salt Lake City.
Operation Kids helps companies identify and partner with charities, like COTA, that demonstrate the highest standards of effectiveness and impact. One of Operation Kids’ corporate partners is XanGo, a Lehi, Utah, based company. XanGo made a gift to Operation Kids as part of its global charitable giving initiative, known as XanGo Goodness. XanGo Goodness actively supports numerous causes that focus on serving the health and well-being of children and families.
“The gift from Operation Kids could not have come at a better time,” said Rick Lofgren, President of COTA. “Each of the families we were able to assist was at a critical point in the transplant process, and they really needed help to pay their transplant-related expenses.”
Approximately 13,000 children are currently waiting for a solid organ transplant, while another 10,000 children are awaiting a bone marrow, stem cell or cord blood transplant, according to Lofgren. Each year about 4,000 children are successfully transplanted. Unfortunately, an equal number do not survive the wait because no match is available. Transplants can cost between $125,000 and $600,000 in direct medical expenses.
“These children and their families face some of the most daunting challenges possible,” said Bob Freeze, Vice President of Public Relations for XanGo. “The physical suffering, emotional pain, and accompanying financial burden combine to put so much stress on everyone. Through Operations Kids, we can support organizations like COTA and perhaps make a difference in the lives of these precious children.”
9th Annual George Taliaferro Open To Benefit Children
 Bloomington, Indiana – March 31, 2008 – More than 130 golfers are expected to hit the links on Monday, June 2nd to help the Children's Organ Transplant Association (COTA) raise awareness and funds to benefit children who are in need of a life-saving transplant. The fun-filled day at the Eagle Pointe Country Club in Bloomington, Indiana, will include prizes, contests, food, and fun. Proceeds from the first eight George Taliaferro Open for Children golf outings totaled nearly $500,000.
"I have been overwhelmed by the response to this event over the past several years, and am grateful for the generous support of the many fine individuals and organizations that come to play each year,” said COTA Board Chairman Emeritus George Taliaferro. “My priority is to help ensure there is an organ or tissue donor for every child who needs a life-saving transplant. After my family, I am most proud of the work I have done to help these children have a second chance at life!"
According to Taliaferro, many Bloomington-area sponsors helped make this event a tremendous success in the past including: Comprehensive Financial Consultants (Presenting Sponsor), David and Bonne Hilliard (Gold Sponsor), Cook Incorporated, Bunger & Robertson, the Bloomington Courtyard, GOC Technologies, Dr. Lisa Baker and Monroe Bank.
"We are thankful to George for his energy and enthusiasm -- I hope when I am 81 I have half his energy level," said COTA President Rick Lofgren. "This event is an annual success due to George’s warmth, generosity and integrity -- all of which allows COTA to provide the resources that have helped families raise in excess of $48,000,000 over more than two decades of serving transplant patients."
COTA Receives Astellas Pharma US, Inc. Grant
Bloomington, Indiana – March 6, 2008 – The Children’s Organ Transplant Association (COTA) is pleased to announce that it has received a $25,000 educational grant from Astellas Pharma US, Inc., located in Deerfield, Illinois. COTA will use these funds for a new, nationwide volunteer and donor cultivation/retention program called, “Miracle Makers”.
“This is a very significant grant that will help us grow our volunteer and donor base in all 50 states,” said T. Michael Ford, COTA’s Chairman of the Board. “COTA is thrilled that a worldwide pharmaceutical company of the caliber of Astellas has recognized the critical work we are doing to help children receive a second chance at life by engaging volunteers and donors in every corner of our country.”
Miracle Makers is being launched as COTA’s volunteer management program. The program incorporates work done with volunteers over the past two decades, and adds a process to replicate this system to other organizations and areas of the country. Miracle Makers will target thousands of past patient fundraising and awareness campaign volunteers in an effort to re-engage them in support for patient families, other volunteer campaigns (as a resource for campaign leadership), or as a support group/donation awareness speaker. Ultimately, the program is designed to raise funds for COTA patients’ transplant-related expenses.
Astellas Pharma US, Inc. is a U.S. affiliate of Tokyo-based Astellas Pharma Inc. “Our 20-year commitment to science and education in the field of immunology has helped advance the care of transplant patients,” said Stanley Bukofzer, M.D., Vice President Medical Affairs at Astellas. “We are proud to support COTA and the important work the organization does to support patient families.
Children’s Organ Transplant Association (COTA) Assists 1,200th Family
Bloomington, Indiana – February 4, 2008 – Earlier this year, the Children’s Organ Transplant Association (COTA) began giving hope and making a miracle for the 1,200th time. The Seiders family of Indianapolis, Indiana, is the 1200th family to begin work with COTA. Their little girl, Lauren, is back at home after she received a new liver … and a second chance at life.
Lauren Seiders, and her twin brother, Owen, were born on May 26, 2006, but only eight weeks after their birth, her parents, Jim and Suzanne, received heart wrenching news about Lauren – she was diagnosed with Biliary Atresia, a disease which can result in death without a liver transplant.
“As a registered nurse, I knew this was a devastating diagnosis,” said Suzanna Seiders, RN. “But I also knew with the three ‘Fs’, faith, family and friends, Lauren would be just fine.”
A day shy of her three-month birthday, Lauren’s transplant journey began with her first surgery at Riley Hospital for Children in Indianapolis. For the next year, Lauren and her parents would spend many days in and out of Riley’s waiting for a donor … for recovery … for good news … for a miracle.
The call came on July 11, 2007, when the Seiders were told a potential liver was available for Lauren. The liver transplant surgery went fairly well, but there was concern from the beginning about poor blood flow due to Lauren’s small vessels and the vessels of the tiny donor liver. Two weeks post-transplant, Suzanne and Jim received the devastating news – the transplanted liver was not a viable match due to lack of blood flow.
That devastation quickly turned to hope when on July 25, 2007, she was wheeled into surgery for a second liver transplant at Riley. “We survived those days by relying on our wonderful family and friends who provided us everything from babysitting to food to a shoulder whenever we needed to cry,” Suzanne recalled.
It was shortly after the transplant that the Seiders’ family and friends met with the COTA to launch a fundraising campaign to help with transplant-related expenses.
With COTA’s guidance, family, friends, business acquaintances and strangers began working to organize fundraising events around Indianapolis to help reach their $100,000 campaign goal.
According to Rick Lofgren, President of COTA, “One liver transplant, with a price tag of $300,000, is financially crippling for any family, even those with adequate health insurance. More than 21 years ago, COTA’s first fundraising campaign was launched in central Indiana, and it is certainly fitting that our 1,200th patient family is from this area of the country as well. The COTA team and the legions of volunteers and contributors share in the mission to give transplant families hope and to make miracles.”
Since the Seiders’ COTA team organized its first fundraiser, this group of dedicated volunteers has raised nearly 90% of their goal. “COTA has given our family the chance to live as we were meant to live prior to Lauren’s devastating diagnosis,” said Suzanne Seiders. “The gift COTA gives is allowing us to truly focus on Lauren and her medical needs without spending our time and energy worrying about how to pay our bills.”
After nearly three months of living at Riley Hospital for Children, Lauren is now at home with mom and dad, big brother Ethan, and twin brother Owen. Her parents describe Lauren as a “feisty little girl who has captured the hearts of not only the little men in our home, but the entire community.” Today Lauren is crawling, starting to pull herself up, smiling, laughing, and simply bringing joy to everyone she meets.
According to Suzanne, “When she smiles from ear-to-ear, it’s as if she knows she was given a cherished gift and that she has been, and continues to be, touched by so many loving people.”
 |
 |
Lauren Seiders
Liver Transplant Recipient
Children’s Organ Transplant Association’s 1200th Patient
The Perfect Valentine Story …
COTA Heart Transplant Recipient Includes Donor’s Parents In Wedding
Bloomington, Indiana – January 19, 2008 – Lindsey Kay Fuhrman and Adam Timothy Allgeier, both of Erie, Pennsylvania, were married today in a ceremony witnessed by hundreds of people. Many of the guests played a part in Lindsey’s heart transplant journey … including Lindsey’s heart donor’s parents.
Until age 14, Lindsey lived a normal life full of sports, babysitting, friends and church activities. It came as a complete shock when her parents, Mark and Dara Fuhrman, took Lindsey to the doctor to treat a lingering cold, and were told she was suffering from Restrictive Cardiomyopathy and needed a heart transplant to survive.
“Those chilling words rang in our ears and in our hearts over and over,” said Mark Fuhrman. “However, despite such an uncertain future, I was constantly impressed by Lindsey’s sense of calm and purpose as we waited for the next steps in the journey, including the transplant call.”
On May 17, 2001, the Fuhrman’s packed the van, stopped at their church for prayer, and drove Lindsey from their Pennsylvania home to the Cleveland Clinic where Lindsey waited in her hospital room for 68 days. During those weeks, the Fuhrman’s met with a hospital social worker who suggested they consider fundraising to help pay the mounting transplant-related expenses. After reviewing several options, the Fuhrman’s decided to work with the Children’s Organ Transplant Association (COTA). Back in Erie, volunteers immediately began working with COTA to organize a fundraising campaign.
Days later, on July 23, 2001, the Fuhrman’s hosted a news conference to announce their fundraising campaign and their association with COTA. After a long day of television and newspaper interviews, they received the call they had prayed for - a donor heart was available. According to Mark, Lindsey’s transplant and recovery were nothing short of incredible, and she was discharged from the hospital seven days post-transplant.
“Living through the trauma of your child needing, and then receiving, a heart transplant is draining both emotionally and financially,” said Mark Fuhrman.
“Although we had good insurance, there was no way we could have calculated the expense of living in a different city while our daughter was waiting for her transplant. Aside from choosing which hospital to have our daughter go to for her heart transplant, perhaps the next most important decision was to start a fundraising campaign through COTA,” he said.
Post-transplant, Lindsey returned home, graduated from high school and began working with children, which is her life’s dream. She regularly traveled to the Cleveland Clinic for tests and it was during a drive to the clinic that she told her father she really wanted to meet her donor family. Not knowing where this conversation was leading, Mark was shocked when Lindsey said, “What if my donor was the only girl in that family? Do you think when I get married we could contact the donor’s Dad and see if he would walk me down the aisle?”
Now, years later, Lindsey’s dream has become reality. After a series of speaking engagements where Lindsey worked to raise awareness about the need for organ donors, Lindsey decided to write letters to her donor family in hopes that one day they might contact her. In October 2005, Lindsey was told by the local Organ Procurement Organization that her donor family wanted to meet her and that the Tyra Banks Show wanted to air the entire story – including their first-time meeting. The story aired in December 2005, but the relationship between Lindsey and Al and Sandy Whitney will undoubtedly last a lifetime. Their daughter, Samantha, was killed in a car accident. Samantha was indeed their only daughter, and their only child. Today, her heart lives in Lindsey.
After the Tyra Banks Show meeting, Lindsey and her fiancé, Adam, travelled to spend time with the Whitneys and to learn more about their daughter. And the Whitney’s were specially honored at Lindsey’s wedding as Lindsey’s “Donor Mom and Dad.” According to Mark Fuhrman, “Sometimes life is better than a fairy tale.”
If you would like to read more about Lindsey Fuhrman’s Transplant Journey,
Mark Fuhrman has authored a Valentine’s Day essay.
Please contact Kim Carter Parker (kim@cota.org) if you have any questions, or need further information.
Lindsey Fuhrman Wedding Photo
COTA Teaming Up with Saturn Retailers for National Donor Day
Bloomington, Indiana – January 15, 2008 – The Children’s Organ Transplant Association (COTA) is a national partner with the Saturn Corporation for one of America’s largest annual one-day donor drives … Saturn National Donor Day, which has been held for the past 11 years on or near Valentine’s Day (February 14th). Saturn anticipates nearly 2,000 community donor drives will be held over the coming weeks to encourage marrow, organ and tissue donations.
“In 2008, a Saturn retailer somewhere in America will collect our 250,000th unit of blood, and we will surpass our 12,000th potential marrow donor added to the National Marrow Donor Program Registry,” said Jill Lajdziak, Saturn General Manager. “And over the past 11 years, 24 potentially lifesaving marrow matches have occurred as a direct result of Saturn National Donor Day.”
Saturn National Donor Day has three main components: organ/tissue donation, marrow donation and blood donation. Through a local Saturn retailer, each serves as call to action to help save lives.
“Almost 100,000 Americans are on organ transplant waiting lists and sadly, an average of 18 die each day because of the shortage of organs,” said Rick Lofgren, CFRE, President of COTA. “We are once again honored to work side-by-side with our Saturn retailer partners to urge each of our country’s men, women and children to make a life-saving donation.”
Chris Klug, a liver transplant recipient and world-class Alpine snowboarder, is Saturn National Donor Day’s spokesperson. Klug received his life-saving transplant in 2000, and in 2002, he won a Bronze Medal for the USA at the Olympic Games in Salt Lake City. According to Klug, “My life was saved thanks to the incredible generosity of a donor family. What better way to celebrate the spirit of random acts of kindness this Valentine’s Day season than to give the gift of life.”
The Best Christmas Gift ...
Bloomington, Indiana – December 11, 2007 – During a season filled with wishes and hope, the Christmas gift most cherished for one West Virginia family is one most taken for granted: having their family together and healthy. Best of all, this is one wish that very well may come true.
Only one year ago Martin and Gina Saunders were told their sons had an extremely rare genetic immune disorder called Purine Nucleoside Phosphorylase (PNP) Deficiency. Martin, Gina and their sons Brayden (age 10) and Trevin (age 8) are from Huntington, West Virginia. Doctors there told the Saunders the only known hope for beating this disease is a bone marrow or cord blood transplant. One transplant, with a price tag of $300,000, is financially crippling for any family -- even those with adequate health insurance. Martin and Gina Saunders must multiply everything by two in an effort to save their boys’ lives.
Currently, this family is living an a small apartment in Durham, North Carolina, so the boys can be close to their transplant physicians who performed side-by-side cord blood transplants last summer at Duke University Medical Center. One transplant worked, but one did not. Martin and Gina share their boys’ story:
In October of 2006, both Brayden and Trevin were diagnosed with PNP Deficiency. They are two of just 55 diagnosed cases worldwide. A bone marrow transplant could possibly correct the T-cell deficiency in their immune systems. So we met with specialists at Duke University Medical Center. Our insurance battles began almost immediately.
Six months later, while organizing bone marrow drives to find donors for the boys, we began to recognize how devastating the transplant process is to a family. We started to see the financial toll the transplant would take on our family. We called the Children’s Organ Transplant Association. Within weeks, our friends, family and colleagues launched a COTA campaign to raise funds for transplant-related expenses.
Early this summer, after pre-transplant testing, Campath treatments began. Campath is a form of chemotherapy that is like a guided missile sent to kill any lymphocytes in the body. Meanwhile, members of our COTA team recorded a benefit CD entitled, “We Believe in Miracles” … which sums up how we are able to endure this process!
July 5, 2007, was a special day – it was Transplant Day! Both Brayden and Trevin received cord blood transplants within a two-hour time span. Both boys did very well - no strong reactions or complications. However, the transplants are not as critical as what happens afterward, so the waiting game began.
Within a month, it was clear that Brayden’s transplant was off and running. Trevin’s was not going so well – there were no donor cells showing up in his system, which meant he had “auto-recovered” his own cells. We were devastated to learn that he might need a second transplant.
Brayden and Trevin celebrated their birthdays in our North Carolina apartment on September 6th and October 2nd. The boys received gifts by mail and many wishes were posted on their COTA website guestbook, but due to their compromised immune systems, visits were limited. These were bittersweet celebrations.
Finally, in late October, we got good news! Brayden had 10% donor cells. Just a bit earlier, the doctor stopped Brayden’s immunosuppressant drug regime to see what would happen. The results were the miracle we had hoped for. For now, Brayden is off the list for a second transplant and doing well. All of his tests have been positive, as his donor cell counts continue to climb and his T-cells (which is what both boys need out of all of this) are doing their thing.
In mid-November, Trevin was re-admitted to the hospital to receive his second transplant. He’s doing well and he is fully ‘engrafted’. All of his counts are looking good and there is every reason to believe he’ll be released from the hospital before Christmas. Brayden has not yet missed a day of venturing from the transplant apartment to visit Trevin in his hospital bed.
Both Brayden and Trevin are ready for Christmas. Some decorations have gone up at the transplant apartment, but the tree is going to have to wait until Trevin gets out of the hospital and the family’s Christmas wish is realized -- all four together for the holiday. “Our Christmas wish is a recurrent one – to be back together again as a family,” explains Martin. “It doesn’t matter that we’re many miles from our house in West Virginia. Home is where our hearts reside.”
One year ago, the Saunders’ family was not sure what this Christmas would hold, having just learned about the boys’ diagnosis. This Christmas, the Saunders’ transplant apartment will be filled with joy, presents, warmth, laughter, hope … and perhaps two holiday miracles.
Donor Sabbath Scheduled for November
Bloomington, Indiana – October 15, 2007 – The Children’s Organ Transplant Association (COTA) is encouraging congregations and houses of worship across the nation to celebrate the life-saving benefits of organ and tissue donation on National Donor Sabbath, November 9-11, 2007. Always held two weekends before Thanksgiving, National Donor Sabbath is an ecumenical celebration of life that reminds congregations of their faiths’ support of organ and tissue donation.
“Thousands of Americans are in need of vital organs and tissues,” said T. Michael Ford, COTA’s Chairman of the Board of Directors. “Each one of us has the opportunity to give someone a second chance at life. One person can save up to eight lives as an organ donor and help another 50 lives as a tissue donor. On this National Donor Sabbath, the Children’s Organ Transplant Association invites faith communities to work with COTA to share donation information from pulpits in cities and towns across the country.”
Observation of National Donor Sabbath is an opportunity for religious communities to touch the lives of millions of people. Currently, more than 96,000 people are on the national transplant waiting list, while hundreds of thousands of people are waiting on life-saving tissue transplants. The sad truth is the number of individuals needing an organ or tissue transplant continues to grow at an exponential rate, but the number of people who register to be a donor is not keeping up with the need.
According to COTA Chairman Ford, “Eighteen people die every day waiting for an organ transplant. We need to take the opportunity given to us via National Donor Sabbath to remind our brothers and sisters of our human family. There is no cost for giving the gift of life; it is the ultimate expression of our highest humanitarian ideals.”
Most religions in the United States either officially support organ and tissue donation, or support the individual choices of their members – donation is viewed as an act of compassion and generosity. Temples, churches, mosques, and other places of worship that observe the National Donor Sabbath do so each in their own fashion.
Michael O. Leavitt, Secretary of the United States Department of Health and Human Services said, “I am heartened that the promise of organ donation continues to save more and more lives every year. For each life saved, hope for others grows. We must continue to grow and share that hope across the nation.”
For more information about National Donor Sabbath, visit www.shareyourlife.org – the website of Donate Life America. Congregations wishing to participate in or plan programs for National Donor Sabbath should contact their local organ procurement organization.
The Children’s Organ Transplant Association (COTA) is a national charity based in Bloomington, Indiana. COTA is dedicated to organizing and guiding communities in raising funds for transplant-needy patients. 100% of all funds raised are used for transplant-related expenses. COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds.
ORGAN DONATION FACTS
1. Anyone can be a potential donor regardless of age, race or medical history.
2. All major religions in the United States support organ and tissue donation and see it as the final act of love and generosity toward others.
3. If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ donation can only be considered after you are deceased.
4. An open casket funeral is possible for organ and tissue donors. Through the entire donation process, the body is treated with care, respect and dignity.
5. There is no cost to the donor or his/her family for organ or tissue donation.
6. Signing a donor card and a driver’s license with an ‘organ donor’ designation may not satisfy your state’s requirements to become a donor. Do your research and let your family know your wishes.
Citing Sharp Rise in Children’s Health Needs,
Pediatric Hospital Leaders Launch New Fundraising Foundation,
Together for Kids™
Bloomington, Indiana – September 26, 2007 – Leaders of children’s hospitals across the country have announced the formation of a new nonprofit foundation, Together for Kids, which will raise funds nationally to help member hospitals cope with dramatic increases in the health needs of children.
At a press conference at the National Press Club, retired NFL star Jason Sehorn urged support for the new group on behalf of himself and his actress wife, Angie Harmon. The couple, who have two children, serve as honorary co-chairs for the launch of Together for Kids.
“America’s children are facing increasing challenges to their health and well-being—challenges that include the growing numbers of uninsured kids, the steadily climbing statistics on childhood obesity and the staggering toll of preventable injuries,” said Together for Kids Board Chair Crystal Hinson Miller of North Carolina Children’s Hospital at the University of North Carolina. “Together for Kids has been formed to rally more resources to make America’s kids healthier and safer.”
Speaking at the event, Sehorn pointed to a host of troubling statistics that demonstrate the need to focus more resources on children’s health. “Since the 1980s, the percentage of overweight children has jumped from six percent to 18 percent, the number of children with asthma has doubled, and the number of uninsured children has risen to more than 11 percent of all kids,” noted Sehorn.
“While the needs are increasing, funding for children’s hospitals is not keeping pace,” Sehorn added. “With children of our own, Angie and I are concerned, and that’s why we’re so glad that Together for Kids has been created to support the critical work of children’s hospitals in caring for seriously ill and injured kids, and to make a focused effort on the issues of childhood obesity and injury prevention.”
Together for Kids consists of 34 children’s hospitals and hospital systems, representing 53 individual facilities serving children in 47 U.S. cities. The network includes major university teaching hospitals, pediatric departments within hospitals, and children’s hospitals in communities of all sizes. The alliance also includes the 20 Shriners Hospitals for Children across the country that provide specialty medical care to children with orthopedic conditions, burns, spinal cord injuries, and cleft lip and palate, all at no charge.
A variety of other nonprofit organizations focused on children have stepped forward to support the launch of Together for Kids. Supporting partners include the National Initiative for Children’s Healthcare Quality (NICHQ), the Boys & Girls Clubs of America, the Child Life Council, Parents’ Action for Children, Docs for Tots, the Emergency Nurses Association, the Children’s Organ Transplant Association and the Association of Child and Adolescent Psychiatric Nurses Division of the International Society of Psychiatric-Mental Health Nurses.
Together for Kids, a tax-exempt 501(c)(3) public charity, will raise funds through corporate sponsorship, events, grants and other forms of philanthropy, distributing the funds to member hospitals to address the most urgent children’s health needs in their communities.
In April 2008, Together for Kids will launch its first annual national fundraising campaign, Come Out to Play!—a month-long series of events around the country to raise funds for hospitalized children and to encourage kids and families to take part in active play that’s healthy and safe.
Together for Kids (www.togetherforkids.org) is a national alliance of children’s hospitals and other hospitals serving children, dedicated to building a healthier future for America’s kids. The organization provides an urgently needed national fundraising mechanism for its member hospitals, helping them care for seriously ill children and tackle the toughest health issues facing all kids, with a focus on childhood obesity and injury prevention.
|
