Update on Kyle Hicks

[bjfish11 35]

Some of you may recall, in the last year or so, Fisher Customs teamed up with SoundSolutions, Sundown, Second Skin, Stereo Integrity, as well as a couple individuals. Together we had a raffle to raise money for a much needed bone marrow transplant for a young man here in Wichita, Kansas. I received an email last week from one of Kyle's coordinators, and wanted to share it with all who was interested, because between the 2 raffles we did, we raised over $2K for him. Here is the exact email...

I felt compelled to write an update after recently hearing a rumor that has been circulating, speculating that Team Kyle has stopped fundraising due to Kyle's death! Nothing could be further from the truth. Kyle is very much alive, and attending his senior year at Northeast Magnet High School. He will be 19 in January. He still lives every day in pain from Recessive Dystrophic Epidermolysis Bullosa (RDEB). He still hopes for a life-saving bone marrow transplant that would potentially allow his skin to grow and heal.

While the procedure exists and has been performed for several kids suffering from RDEB at University of Minnesota - Fairview, finances still prevent Kyle and his family from pursuing this option. Even though his parents both have health insurance, as of this date, both insurance companies have denied coverage, citing the fact that a bone marrow transplant to treat RDEB is still considered "experimental". Meanwhile, a 14 year old girl, Samantha Sheridan, from Florida, recently underwent a successful transplant. She is the oldest patient to date to go through this process. Her story was broadcast on the Discovery Health channel in early December.

Three Wichita area COMPETING car dealers stepped up to the plate to help Kyle after meeting him at this summer's Celebrity All Star Triathlon, a Kyle Hicks benefit. We met with Brandon Steven, Dawson Grimsley and Joe Self. These 3 men promised to raise the rest of the money we needed to get Kyle to the $500,000 goal. They told us to call the hospital, and get the transplant scheduled!

My first call was to COTA's (Children's Organ Transplant Association) President. All funds raised have been held in a fund for Kyle, by COTA. COTA's President called the hospital to advise the transplant team that the $500,000 would be in Kyle's account soon. Then our world fell apart. We got the devastating news back from the hospital that because this is a clinical trial, and because there is no funding to support the trial, the estimated cost of the procedure has gone up to $1.1 million dollars. To begin Kyle's transplant, the hospital would require an upfront deposit of 80% of the potential total (that's $880,0000!).

Kyle's family knows the realities of Team Kyle trying to raise this much money in our current economic times. Therefore, the family has asked that we stop active fundraising for the time being. We hope that Dr. Wagner's paper on this clinical trial will soon be published. Once that happens, Kyle's parents can go back to their insurance companies and ask for another round of appeals. We also know that time is running out. If a child with RDEB manages to live to their late teens, they succumb to deadly skin cancer generally while in their 20's.

Team Kyle has been raising money for 18 months now. To date, we have raised $363,915.31. However, that leaves us a staggering $517,000 from our "new" goal. If you would like to donate, we are certainly still accepting tax-deductible donations, made payable to COTA for Kyle. You can mail checks to Team Kyle, attention: Susan Johnson, 432 W 3rd, Wichita, KS 67203.

I am a very laid back guy, but this kind of thing really pisses me off! Hope everyone will keep Kyle and his family in their prayers. This young man deserves the best! Such a great kid...