A Mother’s Instinct
Like so many other six- and seven-year-olds in Southern California, Adrien and Lillian are kids on the go. They love amusement parks and Roblox. When Adrien isn’t on his iPad, he’s biking and playing with their dogs.
“They’re like typical kids who talk and talk and talk!” Briseida said.
A community college teacher for adults with disabilities, Briseida knows the importance of accessibility for people with neurodivergent needs. So when she gained custody of Adrien, who lives with autism, and his sister Lillian in September 2019, she knew she could give them the love and care they needed.
“Adrien loves to be independent,” Briseida said. “It took him two years to learn how to snap his fingers, but he’s determined to do things.”
That same year, Briseida took Adrien in for an autism evaluation. Immediately, Adrien showed the Gower’s sign — a maneuver where kids use their hands to slowly climb up into a standing position — which is an early indication of Duchenne muscular dystrophy. Genetic testing found both kids carry the genetic mutation. The news, Briseida said, came as a shock.
“Before, accessibility was thinking about kids on the autism spectrum,” Briseida said. “Now, when we go on vacation, it’s one of the top things I’m looking for.”
Research shows Duchenne is far more common in boys than girls. While Adrien showed clear signs, Lillian passed each test, displaying seemingly normal energy levels. But Briseida knew better — none of the appointments ever lasted more than 10 minutes, the time it took for Lillian’s energy to fade. She pushed for months to get Lillian started on the treatment she needed.
“Both kids are fighting — every single day,” she said. “I just had to keep advocating.”
To help her afford the cost of care, Briseida applied for The Assistance Fund’s (TAF’s) Duchenne Muscular Dystrophy Financial Assistance Program. The program provides financial assistance for out-of-pocket costs for all prescribed FDA-approved treatment for Duchenne, including prescription drug copays, health insurance premiums, and incidental medical expenses.
“Instead of having to stress out over money, we can focus on the things that matter,” she said. “When the financial part is taken away, I’m more emotionally available for my kids. I can be a better parent.”
For Adrien, the program ensures he gets some of his care directly at home. Once a week, a home health aide comes to administer his infusions.
“It’s so much easier,” Briseida said. “They can be comfortable and get the medications they need in a safe place.”
With both kids approved and enrolled in TAF’s program, Briseida said the assistance has been a “lifesaver.” Rather than having to take a day off each week from work to drive the family to a hospital, Adrien and Lillian can play on their iPads, watch movies, and just be kids.
“As a working mom, it really does alleviate so much stress,” she said.
