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Hempfield family beset by illnesses counts its blessings

| Thursday, Nov. 22, 2012, 10:11 a.m.
Barry Reeger I Tribune-Review
Addison and Ryan Johnson hold their children (from left) Riley, Alivia, Payton and Ayden in their home in Hempfield last November in this file photo. A fundraiser for the family will be held in New Stanton on April 13.
Tribune-Review
Home health nurse Haley Banasick talks with Payton Johnson as her siblings Alivia,Riley and Ayden look on at their Hempfield Township on November 21, 2012. The children belong to Ryan and Addison Johnson. All four children were diagnosed with an extremely rare incurable disease known as Ataxia-Telangiectasia. Barry Reeger | Tribune-Review

Addison Johnson was told she would never have children.

And so imagine her joy and surprise when she and her husband, Ryan, were blessed with a son and triplet daughters.

Then imagine the absolute heartbreak they felt when the Hempfield couple discovered that all four children have the same rare, debilitating disease that will eventually put them in wheelchairs and will likely kill them at young age.

But on this Thanksgiving Day, the Johnsons will consider themselves fortunate.

“I was told at a young age I'd never have children of my own, but I have four beautiful children, and I'm very thankful I have them,” Addison Johnson, 33, said. “It's a struggle, and we fight for everything we do. But I think what if they were given to another couple who didn't have this in them?”

The children, Ayden, 5, and triplets Alivia, Payton and Riley, who will soon turn 3, were all diagnosed with Ataxia-Telangiectasia, also known as A-T. The disease causes a progressive loss of muscle control, immune system problems and a higher than usual rate of cancer, usually lymphoma or leukemia.

The family, who recently moved into a larger home that was built to accommodate their children's eventual needs, are hoping to get bedroom makeovers for the children courtesy of Special Spaces of Southwestern Pennsylvania and Northern West Virginia.

The charity selected the Johnsons to be their second family in the area to receive a bedroom makeover. The group aims to give dream bedrooms to children with life-threatening illnesses.

Brian VanKirk, Special Spaces director, hopes the charity will have the funds in place for the makeover in time for Christmas.

“We just kind of try to create something special because they spend so much time in their bedrooms,” VanKirk said.

Ayden hopes for a Pittsburgh Penguins-themed room since he loves hockey. The triplets are likely to get Disney princesses rooms. Alivia and Riley share a room while Payton, who also suffers from cerebral palsy, has her own since she will likely need more medical equipment as they get older.

The rooms will be a place the children can go to get away from their therapy and doctors and just unwind.

The Johnsons are one of only two families in the world in which all four children have A-T. With both Ryan and Addison as carriers of the A-T gene, each child had a one-in-four chance of having the disease.

“It seems like we hit the lottery with it,” Addison Johnson said.

The couple did not know Ayden had the disease until she was three months pregnant with the triplets.

They waited — and hoped — that the girls would not have the same fate.

On their fourth wedding anniversary, they found out all three girls had the disease.

“I tried staying positive saying, ‘They're not going to or at least one of them won't have it,'” Ryan Johnson, 33, said. “When they said they all had it, it was a real crush.”

Right now, it's difficult to tell anything is wrong with the children though the girls are having more difficulties walking and talking than their big brother did at that age.

Payton has the most difficulties. She needs a walker to get around and cannot sit without using a booster chair.

Ayden is doing better than other A-T patients his age. He started kindergarten at Stanwood Elementary this year, and the teachers make accommodations for him since he tires very easily.

All of the children receive therapy to help stave off as long as possible the effects of the disease.

Doctors anticipate they will all be in wheelchairs by age 10. The life expectancy for kids with A-T is teens or early 20s, though some people have lived to their late 20s or early 30s.

“I always say I'm in functioning denial,” Addison Johnson said. “I just can't look at them as kid with A-T ... They're good kids. They're just great kids, and I guess I just go on like any other parent would if I had healthy kids.”

The couple said everything they do they do for their kids.

“I'm trying to enjoy the moment and just go with what we have and make it day to day,” Ryan Johnson said.

And the community has already helped them so much.

A benefit dinner held earlier this year raised the money the family needed to make their new home handicapped accessible.

The open-floor plan, wide doorways and stairwells that can be fitted for wheelchair lifts will make it much easier for the kids to get around later.

“I couldn't ask for a better support system than what we have,” Addison Johnson said.

And, as much as they have to deal with, they are also thankful.

“I'm very fortunate,” Addison Johnson said. “I have four children and many people can't have kids. There are people out there with things going on in their lives. It could always be worse.”

Jennifer Reeger is a staff writer for Trib Total Media. She can be reached at 724-836-6155 or jreeger@tribweb.com.

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