Special Spaces builds one-of-a-kind bedrooms for kids with rare disease

GREENSBURG, Pa. — A local nonprofit organization recently raised money and built special rooms in the home of a Greensburg family that has four young children suffering from an extremely rare disease.

Ayden, Alivia, Riley and Payton Johnson are all battling ataxia telangiectasia, a rare and life-threatening disease that will have them in wheelchairs by the time they are 10.

The Johnsons are one of only two families in the world going through what they're going through, and in spite of their circumstances, they remain joyful and happy.

"They will be at their ability now for a while, and then around 5 to 10, they'll start to lose that ability. Then, by age 10, all the kids will be in a wheelchair," Addison Johnson said about her children.

Addison Johnson said the disorder is a combination of cerebral palsy, muscular dystrophy and multiple sclerosis.

"It's just devastating. I always tell people that I'm functioning in denial because I can't look at them as kids with AT. I have to look at Ayden as Ayden, and so on," Addison Johnson said.

Johnson said her family just moved into a larger home that's spacious enough for wheelchairs and ready to handle a wheelchair-accessible ramp.

The Murrysville nonprofit organization Special Spaces worked to revamp the kids' bedrooms into their own special places.

"When they first finished it, they were jumping through the windows," Johnson said.

The girls' room is decorated in a Disney theme with bedspreads, curtains and wall decals.

Ayden's room was decorated with a Pittsburgh Penguins and NHL hockey theme.

"Ayden loves his hockey room so much that he's been making his bed every day, which he has never done before," Johnson said.

Special Spaces had hoped to raise enough money to do the makeovers this year. It reached its goal, and the bedrooms were finished Saturday.

"We had so many extra people show up at the door at 9 o'clock, it was so fun because we were looking out the windows and so excited," Johnson said. "They saw the first story and they just came, so now we know all of our neighbors. It's so exciting and one of the most touching parts."

Go to www.specialspacespgh.org to learn more and to donate.

WPXI