Update: April 14, 2011 

Kyle to receive his transplant!!!

Dear Friends,

We have some wonderful news to share with all of you.   Kyle Hicks WILL receive his bone marrow transplant!

He reports to the University of Minnesota in Minneapolis on April 25^th for a period of testing.  The target date for hospital check in is May 6^th and the transplant should take place ten days after that.  He will be in Minnesota for about four months.   This has all come together rather quickly and Kyle is excited and nervous at the same time. 

We would like to thank everyone for all the many things you have done to help Kyle reach this goal.   Your work planning fundraisers, assisting with them, digging in your own pockets, and all the while giving Kyle such wonderful moral support have been a vital part of this process and is greatly appreciated!  Without the COTA fund you’ve raised, the family would not be able to afford the incidental expenses of the transplant.  The transplant would not happen.

There has been a long hiatus since active fundraising has taken place.  Good things come to those who wait!    About six months ago following the publishing of the clinical trials test results, Kyle’s insurance company notified him they would be reconsidering his request for a bone marrow transplant.  Soon they told Kyle they would cover it.   He and his parents then met with Dr. Wagner again and an estimated time frame was developed.  They would wait for a new hospital wing to open up and the donor had to be tested and make HIS (yes, a perfect match male in his 20’s) plans.  It was just last week when Kyle finally received a final “GO” and solid date for transplant!

It’s an emotional, exciting time for Kyle!   We wanted you to hear this good news from us first!  Again, we thank you for your outpouring of love and concern for Kyle and his family.  Without you Kyle would not be able to fulfill his dream of bone marrow transplant.  Please continue to keep Kyle in your thoughts and prayers as he goes through this life changing procedure.

Many heartfelt thanks!

Kyle Hicks and family

Update: April 12, 2011

Wichitan, Kyle Hicks, finally scheduled to receive bone marrow transplant!

Wichita, Kansas.  April 12, 2011.

Kyle Hicks, now 20, suffers from a rare and painful skin disorder, Recessive Dystrophic Epidermolysis Bullosa, which makes his skin extremely fragile and severely restricts his activity.  Managing the disease requires a daily bandaging regimen to cleanse and cover the blisters that cover his body.   Kyle has a dream to live pain and bandage free and it is finally closer to a reality.  We want everyone who has followed this dream with Kyle to know that he is going for transplant.

You first heard about Kyle when he was 17, and a sophomore in high school.  At that time he was selected to participate in a clinical trial for a groundbreaking new treatment for his illness, the cost of which was initially estimated to be at least $500,000. Insurance denied the procedure.  Local volunteers began fundraising efforts and an account was created with the Children’s Organ Transplant Association (COTA).  The generous citizens of Wichita donated $378,000 over the course of about 2 years.  Unfortunately as more children were treated, the true cost of the transplant was revealed to be well over $1 million. As donations slowed, the cost increased, and the economy crashed, fundraising was put on hold as it became clear that we would not be able to raise the funds.   The only hope for the transplant was the unlikely possibility that the insurance company would reconsider.

After the publication of the clinical trials in the New England Journal of Medicine, the insurance company did reconsider and we were surprised and thrilled when they recently approved the transplant.  This insurance coverage and the funds donated by the generous citizens of Wichita to “COTA for Kyle” have made this transplant a reality.  Without the donations, this transplant would not be possible.

Kyle is scheduled to report to the University of Minnesota in Minneapolis on April 25^th for a period of testing.  The target date for hospital check in is May 6^th.  Ten days later, and after chemotherapy, the bone marrow transplant should take place.   

The story of how Kyle came to be approved for this transplant is a testament to his tenacity.  Until approximately 3 years ago, there was no treatment.  After reading about a clinical trial for EB patients, then 17 yr. old Kyle contacted Dr. John Wagner of the University of Minnesota. He did so without his parent’s knowledge, and he asked Dr Wagner to please help him take away his pain.  Kyle’s plea stuck with Dr. Wagner because he was the only child with EB to make the request for himself.   They began to communicate, and Kyle’s dream began to take on a life of its own.  Kyle was chosen to participate in the trials at the University of Minnesota, Fairview Campus in Minneapolis.  This bone marrow transplant is intended to provide the protein he is missing that creates anchoring fibrils to hold skin layers together allowing his skin to heal.

Marilyn McFadden, COTA for Kyle PR    

Update: April, 2009

It has been a year since Kyle met with Dr. John Wagner of the University of Minnesota about the new experimental treatment for EB.  Kyle was accepted into the clinical trials program and Dr. Wagner estimated the cost for the bone marrow transplant to be from $500,000 - $700,000.  While awaiting approval from Kyle's insurance companies for the treatment, his family decided to enlist the help of the Children's Organ Transplant Association (COTA) to raise money for incidentals that would not be covered by insurance.   When Kyle's insurance companies denied coverage of the experimental procedure, the COTA goal amount was raised to $500,000 to help fund the treatment.

 The hospital indicated they could start the procedure with an 80% deposit when a cost was more closely estimated.  The insurance companies said they would again consider coverage of Kyle's treatment when the clinical trial results had been peer reviewed and published.  A fourth child has now received the experimental treatment and the clinical trial results from the first patient are in the peer review phase.   So the family continues to wait for the results to be published with hope for renewed insurance possibilities and Team Kyle continues to raise funds for Kyle's treatment. 

Kyle now has $262,000 in his COTA fund.  Kyle and his family are so very grateful to those who have contributed to his transplant fund and to Team Kyle for working so hard on his behalf.  Kyle is 18 now and a high school junior.  He continues to hope and work toward his dream of a longer, pain-free life.  Your help can make Kyle's miracle happen.

Thank you for caring about him and sharing your time and resources with him.

The family of Kyle Hicks