Family Focuses on EB Research, Finding a Cure and Helping Others

Kristy and her boys.

Kristy Kissell with her boys, Carson, Charlie and Kolbe.

Feeling Fortunate To Be Patients at Epidermolysis Bullosa (EB) Center

Raising two children with epidermolysis bullosa (EB) can be a challenge. The incurable, skin blistering condition is caused by a lack of collagen protein in the skin where even the slightest friction can cause skin loss in patients. The Kissell family, though, adheres to a regular, daily routine with lots of opportunity for fun and games.

As the mother of two boys with epidermolysis bullosa (EB), Kristy Kissell doesn’t know what she would do without the close proximity of the EB Center at Cincinnati Children’s. 

“We are very fortunate. We feel very blessed to live here in Cincinnati because we only have to drive 20 minutes to get the best care for our kids from those who specialize in EB. It’s just wonderful,” she said. 

What’s not so wonderful, she adds, is the fact many families of EB patients don’t live near Cincinnati and are forced to drive long distances for care and treatment. 

“We actually started an EB Hope Foundation in Cincinnati because we want to be able to help those families that travel so far to get here,” said Kristy. “We have it so nice that if we can help others financially – use the crisis fund to help pay for hotel stays and things – we will.” 

She adds: “The care here is top-notch and everybody who needs it deserves to have it.” 

After a decade of visits, Kristy said her boys – Carson, 11, and Kolbe, 4 – have always had “the best nurses and the best care” at the EB Center. She appreciates how she can call in the middle of the day with a question and staff members answer. In particular, she’s grateful Anne Lucky, MD, medical director of the EB Center, has remained their doctor. 

“She’s phenomenal. She gets to the point. She knows EB very well. I don’t even know when she’s going to retire, but I’m already thinking I’m going to miss her. She can’t leave!” said Kristy, jokingly. 

There is no cure for EB and therefore research is another primary focus of the foundation, which Kristy and her husband, David, started when Carson was 1 year old. 

The foundation hosted its 12th annual Walk for EB in May. To date, the event has raised over $265,000 to help financially support organizations committed to research and the care of EB patients and their families.

A Typical Day with EB

The boys wake up between 7 and 8 am, followed by morning meds and free time to play – Carson prefers video games, while Kolbe is currently all about trains.  

They take baths every other day. Divided up between Kristy and a nurse, bath time for the two boys takes up to four hours, usually from 9 am to 1 pm. Bath set-up is required before the kids even enter the tub, and after set-up each boy does a separate bath soaking with pool salt to make sure all bandages come off without sticking to open wounds.

“Soaking is a key component in EB to prohibit any more harm to the body,” said Kristy. 

After the bath of one child, the nurse and Kristy take him into the heated area where he will stand while the good skin is oiled and moisturized to prevent friction. Each individual wound is treated with topical solutions to help the healing. The process is repeated for the second child. 

Then begins the cleanup process of sterilizing the tub and collecting garbage (usually three bags worth) such as old bandages, scraps of pads and other remnants. When finished, each child wears three layers of protection to help them live as typical a life as possible.

Bath time is followed by lunch and then school work. Kristy is a former schoolteacher who home schools both boys. Daily lessons are followed by dinner and family time before heading to bed, where the boys play more before falling asleep. 

Finding Fun Together

On non-bath days, the boys and Kristy like to visit parks and the library, play games, watch movies, play with their dog, Dug, as well as cooking and baking food, reading aloud books, playing with Legos and building indoor forts. 

“Pretty much anything that can promise bonding time with each other since every other day is so stressful,” said Kristy. 

Besides their care at home, both boys go to clinic at the EB Center once a year, as well as additional appointments throughout the year. Some require trips to Burnet Campus, but for others they often go to the Green Township neighborhood location near their home on the west side of Cincinnati. 

“We’ve received nothing but greatness. We walk into Green Township and everyone knows us there, which is wonderful,” said Kristy.

“I never feel like I’m going to a hospital. I just feel like we’re going to a doctor’s appointment. I never have the anxiety. You just feel very welcomed. It makes you feel right at home.”

(Published: August 2019)

Carson and Kolbe at EB clinic.

Carson and Kolbe during a recent clinic visit.

Keeping Busy Helps Ease The Pain

Carson likes to begin and end each day with his video games. This way, said Kristy, he has something to look forward to when he gets out of bed in the morning and has added motivation to finish his daily schoolwork in the evening. 

While some EB patients use modified video game controllers, Carson does not. He’s able to play PlayStation 4, Xbox and Nintendo Switch like anyone else. 

“I’m a big video gamer,” said Carson, with a smile. 

EB is extremely painful but by staying busy and engaged with video games, audio books, toys and distractions, the boys can minimize the discomfort. Carson also studies the piano and plays baseball in the Miracle League, sponsored by the Cincinnati Reds. 

“We really enjoy it. It gets us out on Saturday mornings. We never thought he’d be able to do it, but he’s doing it, hitting the ball and having fun,” said Kristy. 

As for Kolbe, he loves to dance, especially to Disney movie soundtracks. 

“We play music all day long and he is dancing, dancing, dancing. Music is very therapeutic,” said Kristy. 

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