Loudon baby loses battle with spinal muscular atrophy

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Brooklyn Bouchard, a Loudon baby battling a genetic motor neuron disease, died Saturday, just two days shy of turning 6 months old.

Her mother, Stephanie Bouchard, said she’ll remember her daughter’s big blue eyes and “a smile that would just light up the world.”

Brooklyn was diagnosed with spinal muscular atrophy in November, when she was 2 months old. Spinal muscular atrophy causes the muscles to rapidly deteriorate, taking away basic functions like the ability to breath and swallow. Her health took a turn for the worse Feb. 28, and for the next week and a half her parents focused on keeping her comfortable, Stephanie said. After several days of not really being awake, Brooklyn opened her eyes Saturday to smile at her parents for the last time.

“On Saturday she woke up, and I changed her and I got her dressed and she opened her eyes and smiled and giggled at my husband,” Stephanie said.

She passed away at 1:15 p.m. that day.

Spinal muscular atrophy is a recessive genetic disorder that affects approximately 1 in 6,000 babies. 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, an organization which provides information and help to families like the Bouchards. Stephanie said she and her husband, Matthew, will continue to be involved with Families of SMA, and she plans on advocating for the inclusion of spinal muscular atrophy in prenatal testing. Testing is available, but parents usually have to ask for it specifically.

“I am going to work hard to try and spread the word here in New Hampshire and get people to be aware,” she said.

Family, friends and community members supported the Bouchards throughout Brooklyn’s battle. Stephanie McDonald, the fiancee of Stephanie Bouchard’s brother, put together an online fundraising page and organized a spaghetti dinner March 4 to help cover Brooklyn’s medical expenses and inevitable funeral costs. Ticket sales from Friday’s New Hampshire Idol finals will also go to Brooklyn’s family, according to information on the Facebook page.

Stephanie Bouchard and Brooklyn were unable to make it to the event because of Brooklyn’s health, but Matthew did attend. The community support meant a lot to the family, Stephanie said.

“He was shocked to see that that many people had come out to support Brooklyn,” she said of her husband.

Brooklyn’s illness affected her motor skills, but she was still able to turn her head from side to side and move her arms from the elbows down. She could not sit up, roll over or hold her head up, and had to be positioned certain ways so she could breathe.

But her parents were determined to give her the fullest life possible. She played with the dogs, watched cartoons, enjoyed books and played with special toys that were light enough for her to pick up. She smiled and laughed just like any other baby, and that’s what her mother will remember.

“I could go on for days about her,” she said. “She was a very happy, spirited little girl. And her life was short, but she definitely loved life and loved being around people. She was just a very happy little girl.”

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