Kyle Hicks does his best to be a normal 20 year old.  He enjoys school, working with computers, movies, television, eating chocolate, drinking Coke, and spending time with his cat, Sharon.  He has a dry sense of humor and loves to talk.  He attends Butler County Community College and lives in Wichita, KS. 

But Kyle is not like his classmates.  Painful recurring blisters and open wounds cover nearly all of Kyle's body.  He only weighs 51 pounds and is barely 4 feet tall -- about the size of a 7 year-old. 

Kyle has the inherited skin disease called Epidermolysis Bullosa (EB).  EB is a painful disease.  People born with EB lack the anchoring fibrils that hold the layers of skin together.   They are sometimes referred to as butterfly children because their skin is as fragile as the wings of a butterfly. 

The slightest pressure can cause painful blistering akin to a second-degree burn.  In fact, blisters can arise for no reason at all.  They occur inside the body as well, in the mucous membranes of the mouth and gastrointestinal tract. 

Kyle has a severe form of the illness, Recessive Dystrophic EB (RDEB).   He was born with a blister on his lip.  Minutes later, blisters arose in the shape of fingerprints where someone had held his foot to take blood.  Since then, he has continued to blister inside and out.  Large areas of his body are often devoid of skin.  He is in constant pain, but doesn't complain about it. 

To help prevent infections, Kyle must keep all external blistered areas clean and covered with fresh Vaseline gauze and bandages.  Each day, with his mother's help, he has to spend two hours soaking off old bandages and putting on new ones.  He is usually bandaged from shoulders to toes.  Scar tissue builds up and causes his fingers and toes to fuse together.  Thus, he has surgeries nearly every summer to separate the fingers to allow him to grip things.  Kyle's hands, arms and legs have become somewhat fixed in flexed positions that inhibit his agility and mobility.  He can't do many of the things he'd like to do. 

It is sometimes difficult to eat because of blisters in his mouth and throat.  Nutrients aren't easily digested because of the intestinal scarring.   He is always fighting anemia. 

Most RDEB kids die by the age of 30 with skin cancer or other complications of the disease.  Treatment for EB has been limited to avoiding infection and treating symptoms.  Until now, there has been no hope for a cure. 

Dr. John Wagner and his team at the University of Minnesota Fairview Clinic have pioneered treatment to develop the anchoring fibrils missing in EB skin.  The treatment requires a bone marrow transplant.   

In April, 2008, Kyle consulted with Dr. Wagner and was accepted to undergo this new treatment.  A perfect bone marrow donor match was found early in the summer of 2008.  

Kyle wanted to be a research scientist so that he could find a cure for EB.  He is hoping that job is taken.  Kyle dreams of being pain-free, living a long life, choosing a fun career, and being independent.  He would like to take a quick shower instead of a long bandage-soaking bath.  He would like to cook food.

With the cost of a transplant often exceeding $500,000, many transplant patients are unable to shoulder the financial burden of such a procedure. Kyle's family is no exception.  They chose to work with the Children's Organ Transplant Association (COTA).  COTA is a national charity dedicated to organizing and guiding communities in raising funds for transplant-needy patients. Every dollar donated goes directly to Kyle's cause.  As a 501 (c) (3) national charity organization, COTA provides services that are tax-deductible to the fullest extent allowable by law. 

In Wichita, volunteers are raising funds for Kyle.  We need your help.  Donations, volunteers and fundraising proposals are welcomed.  To find out about volunteering and fundraising, contact Susan Johnson at 316.722.9197.