Family Spotlight

Meet Kyle Hicks ... COTA’s 1,300th Patient

Seventeen-year-old Kyle Hicks of Wichita, Kansas, 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. "

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," said Rick Lofgren, President of 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.

Please visit www.cotaforKyleH.com and leave Kyle your own message of encouragement as this brave teenager continues to hope for a miracle.

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Transplants Today

U.S. Transplant Waiting List Passes 100,000

As of October 6, 2008, more than 100,000 people were registered awaiting an organ transplant from a deceased donor at the United States’ transplant centers. This is the first time in history that the 100,000 threshold has been exceeded.

The kidney is the organ most commonly needed, and most commonly transplanted. More than 400,000 people in the United States are being treated for
end-stage kidney failure, and of those more than 76,000 are listed for a deceased donor kidney transplant. The kidney waiting list has increased by 42% since January 2004, while the liver waiting list has decreased by 4% and the heart waiting list has decreased by 23% over the same time period.

This occurs at a time when the overall number of transplants has increased more than 11% since 2003, and reported deaths on the transplant wait list have decreased each year since 2004. Yet this milestone serves as a reminder to us all of the growing need, and of the opportunity for society to help meet the need through organ donation.

Many efforts continue to increase organ donation and recover as many usable organs as possible from these donors. These include HRSA-sponsored collaboratives to identify
and share best practices, ongoing awareness campaigns such as those conducted by Donate Life America, and numerous professional education and community-based awareness initiatives.

NOTE: At any given moment, not all patients who are listed are actively awaiting a transplant. Those who are in inactive status have been evaluated and accepted by a transplant center. They are not actively eligible for an organ offer due to their current health status, incomplete insurance/financial arrangements or other reasons. These individuals could be reactivated by their transplant center at any time without losing priority for an organ offer. Both active and inactive candidates are reflected in statistics of those who die awaiting transplantation -- nearly 6,700 individuals in 2007.

Source – www.unos.org

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New Related Donor Cord Blood Program Launched

Patients with a medical condition that could be treated by a cord blood transplant may benefit from a new program being launched by the U.S. Health Resources and Services Administration (HRSA) and the National Marrow Donor Program (NMDP).

Cord blood offers an additional option to bone marrow in transplant therapy. Through the Related Donor Cord Blood Program, the families of these patients can have the cord blood of a new baby collected and stored at no cost by one of the participating cord blood banks. The cord blood may then be used to treat the affected biological sibling who has the diagnosed disease, which can include leukemia, lymphoma, a sickle-cell disorder, an immune deficiency or a metabolic disease.

"Cord blood collected at the time of birth may offer another treatment option for a sibling diagnosed with various conditions," said Dr. Jeffrey W. Chell, NMDP Chief Executive Officer. "Physicians nationwide acknowledge that cord blood is a source of the rich, blood-forming cells needed by transplant patients."

Congress recognized the importance of cord blood by passing the Stem Cell Therapeutic and Research Act in 2005. The Act authorized the Related Donor Cord Blood Program, a
three-year demonstration project in which participating and qualified cord blood banks collect and store cord blood at no cost to eligible families.

Patients, families and health care professionals can contact case managers at the NMDP Office of Patient Advocacy to determine eligibility for the program and be referred to a participating cord blood bank. To learn more, call 888-999-6743 or email patientinfo@nmdp.org.

As the nation’s Cord Blood Coordinating Center, the NMDP is committed to helping patients through its network of public cord blood banks and expectant mothers who choose to donate umbilical cord blood for anyone’s benefit. The Related Donor Cord Blood Program helps eligible families benefit from related donation. The NMDP facilitates unrelated marrow and cord blood transplants as a single point of access for a long-standing collaborative network of national and international leading medical facilities in marrow and cord blood transplantation. The NMDP connects patients, doctors, donors and researchers to the resources they need to help more people live longer and healthier lives.

The Health Resources and Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services, is the primary federal agency for improving access to health care services for people who are uninsured, isolated or medically vulnerable. Among other things, HRSA oversees the national systems for organ, tissue and blood stem cell (bone marrow and cord blood) donation and transplantation. HRSA provides national leadership, program resources and services needed to improve access to culturally competent, quality health care.

Source – www.marrow.org

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COTA News

Despite National Economic Headlines and Financial Hardships, COTA Continues to Meet the Needs of Transplant Patients

Given the state of the nation’s economy, the Children’s Organ Transplant Association (COTA) continues to raise funds to help with transplant-related expenses being incurred by children and young adults across the country.

In recent months, COTA effectively communicated the overwhelming financial toll a transplant takes on a family. Presentations to a number of individuals and groups have been met with tremendous support and encouragement.

COTA’s message of hope and miracles has resonated with several key COTA supporters. Donations from those supporters, along with other funds, have allowed COTA to make more than $500,000 available to nearly 100 COTA families this year alone.

"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. To us, these volunteers and contributors are indeed heroes, and are COTA’s Miracle Makers," said Rick Lofgren, COTA President and CEO.

As 2008 comes to a close and the transition to 2009 begins, COTA will continue to make connections and develop relationships with individuals and organizations who want to help give children and young adults a second chance at life.

"Giving Hope ... Making Miracles is more than a slogan for the Children’s Organ Transplant Association (COTA) -- it is a guiding vision," Lofgren said. "I am confident that our
donors’ and volunteers’ commitment to our patients will remain strong, even in times of economic turmoil."

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COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Free Services -- No Fee Charged or Percentage Taken From Funds Raised
The Children's Organ Transplant Association (COTA) does not charge a fee or take a percentage of the funds raised -- 100% of funds raised are available for patients'
transplant-related expenses. Short- and long-term financial goals are set for each fundraising campaign. These goals help the volunteers and the community to understand the family's need before, during and after the transplant. COTA's expertise and guidance is available to the family and volunteers throughout the fundraising process.

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