Donations sought to redecorate for children with rare disease
The Johnson family of Hempfield faces an uncertain future with all four of their children diagnosed with ataxia-telangiectasia, also known as Louis-Bar syndrome. From left: health aide Haley Banusick with Riley, 2; dad Ryan with Payton, 2; mom Addison with Ayden, 5, and Alivia, 2.
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A nonprofit organization that redecorates the bedrooms of sick and disabled children is seeking donations to finish the bedrooms of four Hempfield children with a rare neurodegenerative disease in time for the holidays.
Ryan and Addison Johnson have already upgraded from a three-bedroom house with narrow halls and doorways to a four-bedroom house with doorways, halls and bathrooms that are large enough to accommodate wheelchairs, which doctors believe the children will need to use by age 10.
Their children -- 5-year-old Ayden and nearly 3-year-old triplets Alivia, Payton and Riley -- have ataxia-telangiectasia, which causes a progressive loss of muscle control, immune system problems and a very high rate of leukemia or lymphoma.
Although the gene mutation responsible for the disease must be present in both parents, neither has the disease.
Special Spaces, a nonprofit that renovates bedrooms of disabled or ill children, is hoping to redecorate three rooms in the Johnson home in time for the holidays.
Ayden's room is scheduled to be outfitted with a Penguins theme, and Alivia and Riley's shared room and Payton's room are slated to be adorned with Disney princesses.
Payton has her own room because she also has cerebral palsy and uses a walker because she can't sit or stand on her own and will likely need more medical equipment in her room in the future.
Mrs. Johnson said the kids are excited about their new rooms, especially Ayden.
"I think my son understands a bit more than my daughters," she said.
She said that their home likely will need additional modifications in the future to meet the children's medical needs, including the possibility of installing an elevator or a lift on the stairs and renovating the bathroom to include a walk-in shower that would be large enough to accommodate a wheelchair.
The family raised $14,000 through a benefit dinner in March and also received an additional $14,000 from donations from friends, family and strangers to help with the cost of buying the newer, more spacious home.
Brian VanKirk, the director of southwestern Pennsylvania's chapter of Special Spaces, said volunteers sometimes equip rooms with things like ramps, but because the Johnsons' home is fairly handicap-accessible, the focus will be on new furniture and decorations.
"A lot of it is just extra little special things we can buy for the room because they spend so much time in them," he said.
Mr. VanKirk said all of the redecorating and construction is done by volunteers, but he said about $3,000 still is needed to buy furnishings, linens and decorations for the Johnson children's rooms.
After the local chapter of Special Spaces -- one of 30 in the U.S. -- completes the three bedrooms in the Johnson home, it will move on to do bedrooms for two families in Greensburg, so the fundraising is never done.
To learn more about volunteering or make a donation to Special Spaces for rooms in the Johnson home or future renovations, call Mr. VanKirk at 724-744-1347; mail a check to Special Spaces SWPA, P.O. Box 179, Murrysville, 15668; or visit www.specialspacespgh.org
First Published November 29, 2012 4:51 am