Macomb Township

Local family hopes to find a cure for rare disease

MACOMB TOWNSHIP — Born without skin from her knees down, Katie Parratore spent the first year of her life wrapped in bandages.

The slightest bump or touch caused blisters on her young skin, creating open wounds that had to be treated. The only way to protect her was to cover her tiny body in soft bandages.

Katie, 11, of Chesterfield Township, suffers from a rare disease called epidermolysis bullosa (EB), which keeps her skin from producing collagen.

“Every day, I have to wake up, take care of my blisters and then wrap them if I need to,” said Katie. “If something rubs against it, my skin will turn red and then I’ll get a blister. It’s just a cycle.”

EB is a non-contagious, incurable, genetic skin disorder that affects approximately one in 50,000 children with symptoms appearing at or just after birth.

“Normally, it only hurts in the areas that I have blisters, but it usually spreads,” said Katie. “It’s where I use things the most — normally my feet and my hands.”

Katie’s mom, Sandy Paratore, 42, and also of Chesterfield Township, said the irritation is comparable to a burn or a very severe case of chicken pox. 

Katie’s grandfather, Joe Wicker, 66, of St. Clair Shores, said he never saw his granddaughter’s feet for the first year that he held her in his arms.

“It’s just a physical situation that you observe, and you want to do anything you can to ease their pain,” said Wicker.

Katie said she doesn’t let EB stop her from doing what she wants. With minor adjustments like extra soft gloves, she is able to play softball and ride her bike.

“That is not the norm,” said Sandy. “My daughter has done very well.”

Katie improved after she learned to walk, and water therapies have helped her heal, but according to Sandy, the first year of Katie’s life was the hardest.

“You get some resistance to the pain with some of the gene therapy,” said Wicker. “I have hopes that there will be a more positive treatment and possibly a cure.”

Katie attended a special school for preschool and kindergarten, but she is currently a L’Anse Creuse Middle School sixth-grader.

After hours of research, Sandy and the Paratore family decided to help others who suffer from EB by creating the Kisses for Katie Foundation just nine months after Katie was born.

“My husband’s friends decided to do a fundraiser for us to help us with her bandages, because they weren’t covered by our insurance,” said Sandy. “When we realized how much money we raised, we decided we wanted to become a foundation to help others with the disease.”

With a goal to raise $25,000 to benefit EB research, patients and families, the Kisses for Katie Foundation held a golf outing June 12 at the Bello Woods Golf Course in Macomb Township.

More than 65 golfers played on Saturday, and various businesses, sponsors and residents came out to support the cause.

“We did awesome and even dodged the rain,” said Sandy. “We had a great turnout. Many of our EB families came out in support, as well.”

The event also included an auction in which people stopped by and put their bid on various items including Detroit Lions tickets and autographed items, from the Detroit Red Wings.

Katie was on hand at the event to help pull the tickets for the big auction and pass out T-shirts.

“We have several events throughout the year, but the golf outing is our biggest event,” said Sandy. “Our purpose is to help other families in the area or across the nation with the costs of bandages, educational conferences or any other needs they might have related to this disease.”

The event grossed just under $20,000, just shy of the $25,000 goal.

“These kids deal with this for a lifetime,” said Sandy. “They are never out of the woods. We lost a dear friend to the disease because the life expectancy can be short with the risk of infection from the open sores. A donation, thoughts and prayers are always accepted. I’ll never forget how helpful it was, when Katie was little, to know that I could talk to another mom about how I could feed my baby or put her diapers on. That was a huge help.”

Donations are tax-deductible and can be sent to 80710 P.O. Box, St. Clair Shores, MI 48080. Information regarding the Kisses for Katie Foundation can be found at www.kissesforkatie.org.

“We are very thankful for whatever comes in,” said Sandy. “We send money to research quarterly, so we can find a cure. Even today, the research isn’t very positive. Medicine has come a long way, so we just keep researching and hope to eventually get the right answers. We won’t give up.”