Merril teaches Kyle
Merril teaches Kyle
Kyle learns from Merril
Kyle does the weather
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 and 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.
The Children's Organ Transplant Association is a national charity that provides fundraising assistance for children needing life-saving transplants. 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. 100 percent of all funds raised in honor of patients are used for transplant-related expenses. For more information about COTA, visit www.cota.org or call 800.366.2682.
Current Science Magazine Article for Kyle
Cookbook Fund Raiser for Kyle
Come to the
Gifts from the Heart, Hope for the World
Wichita Alternative Christmas Market
DOWNLOAD FOR MORE INFORMATION
One of Kyle's Grandmothers
News Channel 12 Weather
KYLE EXPLAINS DISEASE
http://www.cotaforkyleh.com/node/89
By invitation of Team Kyle,
Santa Fe ArtWorld is honored to host an on line sale
of Artist Prints and Giclees on Paper for the Children's Organ
Transplant Association (COTA) in honor of Kyle Hicks
with 25% of all proceeds going to COTA for the benefit
of Kyle Hicks.
Please click here to learn more about Kyle.
Kyle is 17 years old, 4'1", 51 pounds, excellent verbal
logic skills, and a great student! He used to think he
would grow up and find a cure for EB, but now that Dr.
Wagner has done that, Kyle wishes to pursue his love
of meteorology.
KWCH, Channel 12 of Wichita, Kansas was kind enough
to have Kyle out for a tour of their weather station and
of Fox 4's as well. Following is a photo essay of Kyle
learning about weather from 12's very own meteorologists, Merrill Teller and Ross Janssen who
showed Kyle how they put the forecast together!
Learn more about others like Kyle:
http://www.usatoday.com/news/health/2007-
10-31-experiment-
transplant_N.htm?POE=click-refer
Your help will give this young man the ability to live his
dreams.
We find that Kyle contributes to all lives he touches.
Your generosity touches his.
copyrighted by Life Touch Photography
Kyle at Storm Team12 Set
Kyle at Fox Kansas Set
Kyle at weather set
Kyle at New 12
Kyle with Merril
Merril explains weather
Kyle with Mike