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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Giving Options

Be Wise With Your Will

A will is a formal way of specifying your final wishes about how best to dispose of your estate while sparing your loved ones a lot of confusion and anguish in your absence. A will is also a way to support causes you care about.

It is important to make smart decisions when it comes to your will.
Here are two common questions, and their answers, about this essential document.

1. What happens if I die without a will? If you spell out your intent with a valid will, then you (rather than state law) will determine how your estate is distributed. Therefore, by specifying your intentions, your spouse and loved ones will receive the inheritance you intended, and a charitable organization such as the Children's Organ Transplant Association can continue to receive your generous support.
2. Where do I start? Begin by consulting an attorney in the state where you live. The attorney will match how you want your estate distributed with the best planning strategy to accomplish your goals -- at the lowest tax cost. This type of planning is beneficial whether you want a simple plan, have a sophisticated estate or wish to include bequests, or gifts in your will, to charitable organizations.
3. Do I need to do anything after creating a will? The federal government has specific laws that govern estates -- and each state also has laws that govern estate plans. If you created your will years ago, and have moved or not reviewed your will in some time, you may wish to have a professional advisor check to ensure that since creating the document, laws have not changed that would impact you.

Please contact Rick Lofgren at 800.366.2682, or email him at , for sample bequest language, or with any questions you may have.

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Ways You Can Help

One Person CAN Make a Difference

If you could save a child's life simply by collecting pennies, would you?

It was her niece, Samantha, who prompted
New York resident Barb Petula to begin working with the Children's Organ Transplant Association (COTA) to raise funds to help with transplant-related expenses. And, it was little Samantha who prompted Barb to develop the idea of a nationwide activity that would encourage individuals and groups nationwide to get involved in the effort to give COTA kids a second chance at life. Barb Petula's idea is now reality and it is called "COTA Saturday".

Each year, COTA Saturday is held on the third Saturday in September. On that date, a legion of volunteers celebrate life, help save kids' lives and remind the public that people die every day because an organ, or tissue, was not available for transplant.

This year, The Blue Knights' NY RIDE - COTA FOR SAMANTHA C, hosted by COTA Saturday's founding volunteer Barb Petula, had over 200 motorcycles and approximately 400 people in attendance. The event also kicked off the group's penny collection and to date Barbara reports that they have over 1,000 pennies donated toward their goal.

We know you already are a leader of a group who strives to make a difference in your community. COTA is offering you chance to join our efforts this fall. It is not too late to
get started!

Participation in COTA Saturday is easy and while the September date has officially passed, you can still plan an event now, or put the date on next year's calendar. There's no cost and you can plan an activity that suits you best … small and informal or large and elaborate ... you make the decision. COTA has ideas to get you started and supplies to help you carry out your plans. As part of COTA Saturday, you can also participate in COTA's Million Miracles campaign. Simply collecting coins can save a life. COTA challenges your group to collect one million pennies this year. To assist you in your efforts, COTA can provide coin boxes, a deposit account at a regional bank, and other tools to make your Million Miracles drive fun, exciting, and successful.

Do you want to help make miracles happen?

One person can make a difference. Millions of pennies can save lives. Miracles happen with your help. Please visit www.millionmiracles.org or call 800.366.2682 to register your group's miracle-making effort.

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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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