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Family to hold fundraiser for Loudon baby with genetic disease

Brooklyn Bouchard

Brooklyn Bouchard

Five-month-old Brooklyn Bouchard loves the cartoon television show Strawberry Shortcake and has just started enjoying watching the Mickey Mouse Club. She giggles and babbles up a storm, plays with the dogs and likes looking at books.

But Brooklyn isn’t a typical 5-month-old: She has a motor neuron disease that is causing her muscles to rapidly deteriorate, and she likely won’t live past her first birthday. When her parents, Matthew and Stephanie Bouchard of Loudon, took her for her two-month checkup in November, their doctor advised them to see a neurologist in Lebanon. About a week later, they learned that Brooklyn has spinal muscular atrophy.

Despite the diagnosis, the Bouchards are determined to give their daughter the most normal life she can have. Brooklyn has limited mobility and primarily eats from a feeding tube. Her positioning constantly has to be monitored because she also has trouble breathing.

“We’ve chosen not to live in the doctor’s office,” Stephanie Bouchard said. “We’ve chosen to keep her home and keep her comfortable because I don’t want to remember her being in a hospital and being hooked up to machines.”

On March 2, the family will hold a spaghetti dinner and raffle at the Community Services Council on Sheep Davis Road in Pembroke from 4 to 9 p.m. Stephanie’s brother’s fiancee, Stephanie McDonald, is organizing the event, and has set up a page on GoFundMe.com that has raised almost $1,500 in just one week. McDonald is also contacting local businesses to see whether they would like to donate raffle items for a silent auction. Some of the money will help the family pay for Brooklyn’s medical costs and eventual funeral costs. The rest will go to Families of SMA, an organization that has helped the Bouchards and other families across the country learn about and live with the disease.

Brooklyn is the Bouchards’ first child. She was born Sept. 11, 2012, and was diagnosed with the disease Nov. 16. Along with keeping her comfortable, both McDonald and the Bouchards want to raise awareness of spinal muscular atrophy, which is a recessive genetic disease that affects one in approximately 6,000 babies and is not screened for during prenatal testing unless the parents request it. About 1 in 40 people are carriers, and when both parents are carriers, there is a 1 in 4 chance their child will have the disease, according to Families of SMA.

“I just want that awareness out there, even if people can’t donate it’s totally understandable, but just so people are aware of what SMA is and (that) it’s so close to home,” Bouchard said.

Brooklyn can turn her head from side to side, move her arms from the elbows down, and slightly move her feet. She can’t, however, sit up, roll over or hold her head up. She must be positioned certain ways so she can breathe. She enjoys being in the bathtub, because she can move around a bit more, but over time her mobility will worsen, Bouchard said.

Two months ago, she began eating through a feeding tube. As of now, she can still swallow, but nursing exhausts her body too much, Bouchard said. She’s just now starting to have trouble breathing.

“They told me when she was diagnosed that day to take her home and enjoy what time I had with her, and, thankfully, she’s been holding strong all this time,” Bouchard said.

Bouchard had to leave her job at Concord Hospital when Brooklyn was diagnosed because she needs constant care.

Since Brooklyn can’t turn her head, her parents have set up a mirror near the rug she sits on in the living room so she can see what’s behind her. Families of SMA also sends care packages to families with newly diagnosed children, filled with things that can help make the children comfortable. Brooklyn’s care package included a sheepskin blanket, lightweight toys that are easy for her to pick up, a bath mat wedge and a special car mat because she can’t sit in a regular car seat.

Through the group, the Bouchards have connected with families going through the same struggle. Bouchard said she’s met two other moms whom she talks to almost every day. Both of their sons were close to Brooklyn’s age when they died recently. Those mothers understand what it feels like to wake up every day knowing it could be the last day their child nurses or plays.

“I talk to these moms every day since this has happened,” she said. “Yes, people are there for you and try to be helpful, but you don’t really know what it’s like unless you’re living it.”

The Bouchards are determined to make the most of Brooklyn’s time. This past weekend, they planned to take her sledding in the snow. They let her taste baby food even though she can’t really eat it. They want Brooklyn to live her short life to the fullest.

“The thing with Brooklyn is we just try and let her live as much of a normal life as possible,” Bouchard said. “We try not to focus on the fact that she isn’t going to be here.”

(Kathleen Ronayne can be reached at 369-3309 or
kronayne@cmonitor.com or on Twitter @kronayne.)

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