Benefit dinner set for family with four special needs children


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In October 2012, the Johnson family of Hempfield moved into a larger home, one that can accommodate the medical equipment each of their four children eventually will need.

Ryan and Addison Johnson's children -- Ayden, 6, and triplet girls Alivia, Payton and Riley, 3 -- have ataxia-telangiectasia, also known as A-T, which causes progressive muscle control loss, immune system problems and a very high rate of leukemia or lymphoma.

The Johnson family is one of two known families in the world with four children diagnosed with A-T, Mrs. Johnson said.

A benefit dinner and auction to raise money for the family's future needs will be held at 6 p.m. April 13 at the New Stanton Fire Hall, hosted by The Friends of the Johnson Family. This is the second such fundraiser; in March, a benefit dinner and auction raised about $30,000 to make their home handicapped-accessible.

Half of the funds raised this year will be donated to the A-T Children's Project in Florida, which conducts A-T research, Mrs. Johnson said. The website for the project, www.atcp.org, features Alivia's photo as well as a photo of the entire family.

"We met the volunteer CEO, Brad Margus, at a conference in Columbus, Ohio, in May of 2011. He started the project in 1996. He has two sons diagnosed with A-T," Mrs. Johnson said.

Amy Kulis of Hempfield, a friend of the Johnson family and one of the organizers of the benefit, said the kids' needs are becoming more involved.

"Last year, we worked to help them get into their house, and this year's benefit is to help with the extra things they will eventually need."

While the children's health care is covered under Medicaid, some items, such as a handicapped-accessible vehicle, are not.

The family has a seven-passenger SUV, but Mrs. Johnson calls it a "circus" when they all need to go somewhere.

"The only way to get Ayden in and out is through the lift gate in the back, so we have to lift him," she said. Special car seats for the girls are lined up in the middle seats and cannot be easily removed for access to the third-row back seat.

A handicapped-accessible Honda Odyssey minivan starts at $80,000. It would not be covered by insurance.

Another item on the list of future needs is a $25,000 wheelchair platform for their home.

"We'd like the children to remain as independent as possible," Mrs. Addison said. The wheelchair platform lift would be connected to the stairs in the Johnson's two-story home.

Ayden, now in kindergarten at Stanwood Elementary, was diagnosed as a toddler when Mrs. Johnson was pregnant with the triplets. The girls were diagnosed at 8 months of age. Payton has a dual diagnosis of A-T and cerebral palsy. While doctors have told the Johnsons to expect all of the children to need wheelchairs by age 10, during their most recent visit to Johns Hopkins in Baltimore, they received good news: Ayden is doing far better than most 6-year-olds with A-T.

"He's very mobile, our most mobile child," his mom said.

Alivia and Riley go to preschool on Tuesdays and Thursdays. Mrs. Johnson said they often fall, but they "don't fall as much when they are running, so they are constantly running through the house."

Payton attends the Easter Seals program in Export for therapy and uses a walker. A new medical stroller was just ordered for her at a cost of more than $3,000. The family is still waiting to hear if it will be covered by insurance.

Special Spaces, a national nonprofit with a chapter in Murrysville that designs bedrooms for critically ill children, provided a new bed for her in December.

The Johnsons count each blessing.

"We have the best children anyone could ask for," Mrs. Johnson said.

The triplets are "into everything," she said. "They like to dress up like pretty princesses." They love to dance and watch preschool television programs.

Mr. Johnson works full time as a dock worker for Estes in Eighty Four, and Mrs. Johnson is at home with the children. Much of the children's therapy takes place at school now.

Still, breaks are welcome. "We have some friends from church and they will call and tell us, 'We need to see those babies, so you plan on going out,' " Mrs. Johnson said. Her church, New Life Tabernacle in New Stanton, has provided support, as have friends and family.

Tickets for the benefit dinner and auction are $10 for adults and priced on a sliding scale for children. For tickets or to donate: Addison Johnson, 724-422-7744 or addidawn@yahoo.com.

neigh_east - neigh_westmoreland

Jill Thurston, freelance writer: suburbanliving@post-gazette.com.


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