An update on Kyle - 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, or donate directly through Kyle's COTA website.

Kyle, Now that the program has been opened to non sibling matches I hope your fund raising efforts have provided you with enough to proceed to transplant. The BMT has proven successful for us. Fallyn is now Day +98 and continues to improve. Your insurance company should relent on this issue but probably will not. Bean counters! We had to fight ours too but Dr wagner was able to prevail for us. His paper should be out soon. I look forward to fpollowing your progress. Frank P. McNamara father to Fallyn RDEB-HS Contact me through her website helpfallyn.org and I will verify your contact information and send you an invitation to her private care pages site. I kept it private because I do not want the detailed information or the clinical photos I posted exploited. Their site is not right click protected. You may already know of Kerick's and Samantha's public careing bridge sites and Hannah's acureforhannah.com there is a lot of GOOD information on there for those anticipating in the BMT program.

We hope everyone will come out tomorrow to support the "Born To Be Wild" Kyle Hicks Poker Run at Cambridge Market, 21st & Webb Road! The registration begins at 9:30 am, the run starts at 10:30 am, and concludes at Louie's at Cambridge Market. There are a bunch of really cool raffle prizes and silent auction items. Register early to get a free t-shirt! Our fundraising total is now at $317,000! Thank you, everyone!

Check out the current total in the account! We have FINALLY and officially reached the $300,000 mark! Also, the Northside Church of Christ multi-family garage sale brought in an awesome $3,207.17 for their 3-day sale last week! Our next big event is the CAST Party (Celebrity All-Star Triathlon) coming up on Tuesday, June 30th at All Star Adventures East!

Hey, wasn't that a cool fund raiser at Larry Buds' yesterday? They had some Bar-B-Que teams there that really know how to serve up some good Que. I really enjoy it when we have a chance to talk about anything and everything, you are wise beyond your years my brother. I stopped at Sports Time Fan Shop in Cambridge Market after I left and picked up a couple of T-shirts that they are selling for your next benefit Poker Run. I'm ready to ride now. Have A Good One and I'll see you later.