Tough on the inside: Girl, 6, fights for normal life

Gail Franklin

McKenzie Gray has painted her fingertips with metallic blue polish, but the color will flake away in the night because she has no fingernails.

That’s one of the smaller side effects of the rare, non-contagious skin disorder that the bright 6-year-old has lived with her entire life.

McKenzie’s main physical concern is that her skin is fragile like tissue paper and prone to painful blisters. She was born with epidermolysis bullosa, which is found in 1 of every 50,000 live births, according to the National EB Registry.

The disorder takes an immense amount of care by her parents, Greg and Missy Gray, of McElhattan, and a lot of will by McKenzie not to scratch herself, bump against tables or brush against her friends at school. If she does, her skin will tear away and take months to regrow.

A benefit for McKenzie will be held at 6 p.m. Sunday at the Beech Creek-Blanchard Volunteer Fire Company Social Hall, hosted by the Kels Lomison & Friends band and the Beech Creek Wesleyan Church.

The family will use the money to pay for the special ointments, bandages and the physical therapy sessions that cost thousands of dollars but are not covered by their medical insurance.

While McKenzie sits on a couch in the family’s living room and brushes the pink hair of a My Little Pony doll she appears small but not unhealthy.

Her sweet smile and quick intelligence mask the fact that the skin disorder has attacked her inside and out. Her thighs are raw from ulcers that formed after blisters healed, and the disease has caused her joints to seize up where blisters had formed so that she is not able to straighten one leg or use her ankle.

A nurse goes to her first-grade class with her to monitor for blisters that must be popped right away so they don’t spread.

Her parents constantly remind her to be careful, but it’s hard for a vivacious young girl like McKenzie to always remember.

‘Not different, just special’

Despite her difficulties, she dances and twirls, mostly on her good leg, when favorite singer Hannah Montana comes on the television. She knows most of the words and hopes to start singing lessons soon.

Her parents look on, both happy and wary of any chance of a fall, and talk about her successes and struggles. “Just her demeanor is what helps her get through this and the pain she endures on a daily basis,” Missy Gray said. “We’ve been talking about why God made her different, and it’s just that everyone has a different thing in life.”

Greg Gray, who sees that McKenzie is listening, is quick to say, “You’re not different, just special, right?” McKenzie was adopted when she was a day old by the Grays, who said they were told she had a skin disorder but felt called to take on the responsibility.

None of the family takes skin for granted anymore.

“We chose this, and we were willing,” Greg Gray said. “We basically sacrificed our lives for her ... but I wouldn’t trade the sacrifice for anything.”

The Grays have worked hard to learn as much about the disorder as they can and find the best treatments for their daughter. She recently underwent surgery at Cincinnati Children’s Hospital to have a feeding tube installed.

McKenzie can’t eat hard foods, such as potato chips, because they would scrape the esophagus and cause tearing and scarring. The food restrictions and constant demand on her body to produce new skin means she’s never been able to get enough calories in her diet.

While she’ll still eat normal meals, the tube will be hooked up at night with a high-protein mix to try to increase her nutrition.

It’s a hard transition for McKenzie to have a painful tube coming out of her middle, but she is a resilient child. McKenzie had no skin on her lower legs when she was born.

“I remember the first day we had to learn to change her bandages before we were allowed to take her home,” said Missy Gray. “It was two or three days before we actually saw what was under the bandages.”

Now, her parents bathe her and change her bandages every other day, and they say it’s the most emotionally painful thing they’ve had to endure.

Sometimes the flesh peels away if not done carefully, and the 31/2-hour process is painful for McKenzie and ends in everyone crying on those nights. The family has installed a television in the bathroom to ease the tension and bought a soft doctor’s table, even though it wasn’t covered by insurance, in the hope it will protect her during bandage changes.

More perspective

Greg Gray recalls one night this summer when McKenzie was especially in pain and every time he moved he caused her to cry out.

“I was shaking,” he said. But the family is determined to give McKenzie the most healthy and normal life possible and to be thankful for her love.

“She’s changed both our families for the better” said Gray, referring to their extended families. “She’s given us perspective.”

The nail polish on her fingers, her effort to emulate her mother’s polished nails, is just one example of McKenzie’s desire to lead a normal life.

It will be gone tomorrow, but that just means she’ll get to choose another color.