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Local family to appear on MDA telethon

By Kathy Jefcoats

McDonough residents Ben and Tonya Mason will appear during the annual Labor Day MDA Telethon to talk about the disease their son lives with every day.

William Mason, 19 months, was diagnosed with an intermediate form of Type II spinal muscular atrophy nine months ago. SMA is one of 40 diseases covered by the Muscular Dystrophy Association.

"We were just concerned that he wasn't meeting the milestones other kids do at that age," said Tonya Mason. "He was not able to bear weight on his legs."

The diagnosis of the disease in their only child was a surprise at first.

"My husband and I carry the auto recessive gene," Tonya Mason said. "There is a 25 percent chance a second child would also have the disease so William may be our only child."

Further research into family history revealed a cousin who died from complications from Type I SMA.

"We didn't think it was the same thing," said Tonya Mason. "Most families don't even know what it is."

Victims of Type I SMA have a diminished life expectancy with 50 percent dying before 2. Type 2 victims live longer but doctors can't seem to pinpoint how long.

"They don't quote life expectancies for Type 2," Mason said. "You don't die from the disease, you die from complications caused by the disease."

William can sit independently but doctors are doubtful to his ability to walk. His mother is more optimistic.

"We're working on walking," said Tonya Mason. "Always, there is hope. I would never say he will never walk."

The child's cognitive development is the same as any his age. The disease just robs him of the use of his muscles. Since his diagnosis, William has undergone intensive therapy through Babies Can't Wait at home and at Scottish Rite Hospital in Atlanta n six sessions a week.

Because of the muscle weakness, William has difficulty coughing on his own. Being able to clear his lungs will go a long way toward staving off lung diseases such as pneumonia.

"We're getting a coughing machine and seeing a specialist in New Jersey this week," she said.

In less than two years, William will be old enough for pre-K classes and his mother expects him to be there. Right now, the parents are working on getting him a power wheelchair to help him explore his environment as other 19-month-old kids are doing.

Tonya and Ben met while as students at Georgia Tech. Ben got an engineering degree and works as a heating, ventilation and air conditioning technician. Tonya was a teacher when William was born and intended to return to that profession.

"I am probably not going to do that anytime soon," she said.

Now a stay at home mom, Tonya takes care of William both at home and during his many doctors' visits. She is not alone in her efforts, however.

"We get a lot of help from both our parents and our neighbors," said Tonya. "I don't think we realized how wonderful people can be till we needed them."

Ben and Tonya are now active in the MDA community. She is team captain for an Oct. 23 annual fundraiser in Gwinnett, the Walk of Hope where participants are encouraged to "walk, roll or stroll" to raise money for MDA.

The Masons are scheduled for a two- to three-minute interview at 4:25 p.m. on Labor Day to talk about William and how MDA has helped their family.

"We're excited about being on the telethon," she said. "SMA is not well-known and we get to talk about that and how wonderful the MDA is."