Normal ~ as he knows it

Boy with rare skin disease living only way he knows how

Posted: Sunday, October 09, 2005

 

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  Elijah Elsey reaches for a paper airplane after rolling gently out of a hammock in the family's yard in Sterling. "He loves to play, to be in the yard," mom Amber Elsey said. "The big difference for him is he has to have his bandages changed once a day, sometimes more. You can't have any kind of adhesive tape or Band-Aids on them. It has to be wrapped in gauze to keep clean. It's kind of like a child with third degree burns." Photo by M. Scott Moon

Elijah Elsey concentrates on a computer learning game after coming home from kindergarten at Sterling Elementary School last week. A bandage covers a small blister he suffered that day at school a wound that he could still have when he graduates from high school as a result of a rare skin disease with which he was born.

Photo by M. Scott Moon

Imagine the birth of a child, this time your fifth. And when you lift his feet to change his diaper, all the skin you touch peels away.

Imagine the first week of seeing a newborn child, knowing something is not right, and doctor after doctor passes through the examinations and none know the reason for what is wrong.

Imagine being a child, and finding out early in life that something about you is different; that when you play inside or outside, you have to be careful about playing a game as simplistic as "Tag."

For the Elsey family of Sterling, it is more than imagination. It is real life.

On Feb. 10, 2000, Amber Elsey gave birth to a son, Elijah. His father, Jim, was nothing short of stunned the day he went to change Elijah's first diaper. Several more days, and doctors who visited, passed before they knew the cause of Elijah's skin peeling away.

Elijah was born with Epidermolysis Bullosa. It's called EB for short, and it is a very rare skin disease.

 

Amber Elsey changes her son's bandages as he nibbles an after-school snack. He suffers from the dominant dystrophic form of epidermolysis bullosa, or EB for short. He has to work hard to avoid injuries and take special care of those he has already suffered.

Photo by M. Scott Moon

EB refers to a group of rare, inherited skin diseases. They are characterized by recurring painful blisters and open sores usually the result of the unusually fragile nature of the skin. The three major forms are Epidermolysis Bullosa Simplex (EB simplex), which is most common of the three; Dystrophic Epidermolysis Bullosa (DEB), and Junctional Epidermolysis Bullosa (JEB). There are at least 16 subtypes.

Elijah was classified with DEB, which has both dominant and recessive forms. Elijah's is dominant. Those with recessive are not expected to live longer than about two years.

"He was born with blisters on his head and chest," Amber said. "At first, the local hospital didn't know what was going on. They called four or five doctors from the area to look at him; everybody had a hypothesis, but didn't really know what was going on."

On Elijah's fourth day, Dr. Alex Russell of Soldotna saw him.

"Five doctors looked at Elijah, none of them knew what the problem was," Amber said. "He was there five minutes and knew it."

But what to do next became a mountain of a problem.

"Special skin," special child

 

Sterling Elementary kindergarten teacher Suzanne Martin helps Elijah Elsey, seated, and some of his classmates with a project last week.

Photo by M. Scott Moon

In August, Elijah was preparing for his first year in a school. He's a kindergartner, and he's ready for the challenge that awaits him.

He knows how to handle himself and his condition, and he does it with a bit of aplomb — never mind he's 5 years old.

"I'll tell them that I have special skin," Elijah said.

He'll also tell them that rough-housing, or wrestling around as young boys are wont to do, cannot include him. And there'll be a list of dos and don'ts provided by Amber and Jim.

But despite all that, this youngster is active and eager for the opportunity, ready to meet other kids and already knows the best part of school.

"Recess!" he says with a wide grin.

Elijah's blue eyes and blonde hair, gentle smile and affinity to play the same games other children play will give him a natural confidence and plenty of friends. Whatever drawbacks and adversities EB has placed in Elijah's life will be offset by his natural charisma.

 

Elijah Elsey reaches for a paper airplane after rolling gently out of a hammock in the family's yard in Sterling. "He loves to play, to be in the yard," mom Amber Elsey said. "The big difference for him is he has to have his bandages changed once a day, sometimes more. You can't have any kind of adhesive tape or Band-Aids on them. It has to be wrapped in gauze to keep clean. It's kind of like a child with third degree burns."

Photo by M. Scott Moon

This is a youngster who realizes the seriousness of EB yet carries forth in a life that, unless noted, looks no different than that of another 5-year-old in the same setting.

First heartache, then education

As for those early days in Elijah's life, it could have been much worse.

"I know for Dr. Russell being able to give them the information right away, it saved them a lot of heartache," said Christina Bowman, a close family friend. "They had never read about it, never heard about it. They educated themselves, found an organization and other parents, and where to go for care. There wasn't a lot of resources. The way they handled it was awesome. Others might have panicked."

As time passed and Elijah grew older, the Elseys found other parents of children with EB. They also found that Stanford University in California was the nearest place to get treatment — even for the otherwise simple task of cleaning of his teeth.

 

Elijah Elsey leads his sister Macylea off the bus to the delight of the family's dog Mr. Magu. Elijah has two sisters and three brothers.

Photo by M. Scott Moon

"Amber and I both were scared," Jim said of those early days with Elijah. "We had no experience with him. They had no idea what was going on. Nobody was experienced with it. Amber takes him to Stanford to get his teeth cleaned. Nobody around here is qualified to do it. It's not a knock, it's just that rare."

Since then, they've found other parents and groups for support and expression. The experience has been both eye-opening and soothing for a unique family.

Bandages and love

Elijah, meanwhile, grows and adapts like any other 5-year-old. He enjoys participation in many of the same activities as others his age, just sometimes with a little more delicate care.

"He loves to play, to be in the yard," Amber said. "The big difference for him is he has to have his bandages changed once a day, sometimes more. You can't have any kind of adhesive tape or Band-Aids on them. It has to be wrapped in gauze to keep clean. It's kind of like a child with third-degree burns. If his wounds are open, it takes a couple of bandage changes a day.

"If he has open wounds, they can be painful to change. He has to take a bath three times a day to keep the wounds clean. It does help to soak the bandages away from the wounds. We spend as much time swimming as possible. It's the one sport he can be active and it doesn't give him as much trouble. If he has open wounds, it's a pain to bathe and swim. If he has no open wounds, he can swim with no pain. It's his favorite thing in the world to do."

 

Jim and Amber Elsey load Elijah, Mackenzie, Macylea and James into the family vehicle for a drive to their grandpa's house.

Photo by M. Scott Moon

Though it is no small thing, Elijah is also like any other child born with a rare disease, or handicap. He's growing up in the only world he knows — one with EB.

His parents say Elijah can ride his bicycle and play like most children, but if he does blister it goes all the way to the bone and doesn't go away. Any blisters he gets will last 10 to 15 years.

Jim, a letterman at Kenai Central High School in track and football, still manages to do father-son activities with Elijah like fishing and camping. Elijah also plays in the parks — "normal stuff," as Jim describes it.

"It's the only life he's had," Jim said. "He calls it his special skin."

Added Amber, "Sometimes kids come over and want to play tag or grab each other, and we have to stop them. We have no carpeting at all. It would cause big blisters if he trips and falls. If he goes to someone's house with carpeting, he is very careful. He's learned to be very responsible."

It's a delicate world to say the least. The parents have such pride in all that Elijah has shown them, both as any other 5-year-old and as a 5-year-old with a very difficult disease with which to live.

"He's very sweet, well-behaved," Amber said. "It's amazing how he's learned to take responsibility. He's never one time complained about his blisters or his skin. Even when he's bleeding and it's painful, he will cry from the pain of changing bandages, but he doesn't complain. It's amazing.

"For the past year, he's had some blisters in his mouth. I didn't know for two to three weeks. One day I watched him eat, and he winced. I asked him about it, and he said when he eats, it hurts. I looked and his whole mouth was covered with blisters."

Bonded

against adversity

Bowman described the Elseys and their children — Dakota, 12, Caelan, 10, twins James and Macylea, 8, and Mackenzie, 1 — as somewhat of an inspiration.

"They are amazing," Bowman said. "They're hands-on. They come up with a lot of crafts. Even at dinner time, it's chaotic, but fun."

And life has certainly been chaotic, particularly this summer. They attempted to adopt a baby girl with EB but ran into a multitude of problems. The adoption is still pending legal maneuvers.

But don't look for a gloomy face from Elijah. Amber said he doesn't get depressed due to his situation. And Bowman assures the Elseys are well prepared in handling stress and uneasiness.

"I've seen firsthand many times how they handle a lot of stress," Bowman said. "I remember once, in the hospital, they tried to give Elijah an IV, and it was taking hours, and (Amber) had all the patience in the world. She offered him ice cream and just loved him through it all."

These days, the nonemotional tough-guy father remains a rock for the family, but softened ever so much by a son who continues to amaze not only his family but others who see him.

Jim knows he's grown as a man, though not in a braggadocios way. He'd be the last to tell you. But his wife and friends know how fine a father he was before Elijah, and they readily attest to the positive impact he continues to have on all of his children.

Jim says his hope for Elijah is that it doesn't get any worse.

"I want him to be able to do sports in high school," Jim said. "I want him to be able to ride four-wheelers and be a normal kid, just have the opportunity."

Amber says her faith in God has been a sustaining blessing.

"With his guidance, it always works out," Amber said. "When I do it on my own, I fail."

And there's no failure in Elijah, or his family.

Alan Wooten is a freelance writer who lives in Nikiski.



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