Generosity helps remodel Hempfield home for disabled
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Raising $15,000 to make their new home handicapped accessible for their children seemed a lofty goal to Ryan and Addison Johnson in the beginning.
But then money began arriving in the mail from unexpected places.
After word spread that the Hempfield couple has four youngsters with a rare, inherited, neurodegenerative disease that causes severe disability, the family received $14,000 in donations from close friends and complete strangers, in addition to the $14,000 they raised through a benefit dinner and auction in late March.
"We were surprised," Mrs. Johnson said. "We were really surprised."
The first of the 54 mailed donations, which came from as far away as Canada and California, was sent from a family who asked not to be identified and included a note and a check.
"Then it just started growing like wildfire," Mrs. Johnson said. "We got some checks as small as $15 and we got others as large as $3,000."
When Mrs. Johnson was four months pregnant with triplets, their toddler, Ayden, was diagnosed with ataxia-telangiectasia, which is found in about 1 in 40,000 people and 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.
The now 2-year-old triplets, Alivia, Payton and Riley, also were diagnosed, making the family one of only two in the world with four children who have what is called A-T.
Payton, who appeared to be the most observant of the three girls as she sat in her father's lap on a recent afternoon, also has cerebral palsy and uses a walker because she can't sit or stand on her own.
Doctors believe the children will need to use wheelchairs by age 10, which their current home can't accommodate, prompting the family to buy a bigger home with more open space.
When the couple discussed costly options to make the house accessible to the kids, their Realtor suggested holding a benefit dinner and auction.
The family had reservations, but in February Mrs. Johnson decided it was worth a shot.
She began canvassing the local business district handing out letters explaining her family's situation and asking for help.
"I just walked into stores and asked for the manager," she said. "Some of them said no and the ones that said they would call me back, I took their number and called them."
Many of the businesses responded. Dick's Sporting Goods donated $2,000 in gift cards. Consol Energy, RE/MAX, Greensburg Beverage Inc. and other local companies and restaurants donated hundreds of dollars each.
Sarris Candies in Washington sent a check, as did some of their employees.
"You have a very beautiful family and my thoughts and prayers are with all of you," wrote Jody Jackson, an 18-year-old Sarris employee in a card from her family. "If there are any other opportunities to get involved, the girls at Sarris would like to help."
Like most of the personal notes the Johnsons received, hers ended "God bless you."
For the auction, the Penguins gave the family a water bottle of melted ice from the Civic Arena and the Pirates gave signed memorabilia from Andrew McCutchen and Neil Walker.
On Mother's Day the Johnsons and their family will watch the Pirates take on the Houston Astros from a private box, catered and stocked with beverages, courtesy of the team.
One family offered their time share; when the Johnsons declined because they have a vacation already planned for the year, the family asked if they would like to use it in 2015.
Mr. Johnson said the experience gave him an opportunity to connect with other parents of children with A-T at the benefit, and he was touched by the number of people who offered help.
"It turned out to be way more than I ever planned for," he said.
He hopes that the fundraiser will create a greater awareness of the disease in the local community and the medical field.
Mrs. Johnson said the community response has touched them deeply.
"We had just a great success," she said, before her voice began to trail off. "We didn't even think ... ."
In the spirit of giving and paying forward the kindness bestowed upon them, the Johnsons said they will donate excess funds to the A-T Children's Project, one of the few groups that conduct research into the disease.
First Published May 10, 2012 5:25 am