From the moment their daughter was diagnosed with spinal muscular atrophy (SMA) type 2 in 2009, Dyla Gutierrez’s parents have focused on one thing: helping her preserve her strength.
“I mean, this is our hope and dream for Dyla. We want Dyla to be stronger. We want her to have every opportunity that every other child has,” says mom Dyla.
At first, maintaining strength meant doing aquatic therapy. They knew that when their prayers were finally answered and a medicine was available to treat Dyla, she needed to be ready. “So we just focused on keeping her strong,” says father Marco.
Now, thanks to Spinraza, the first disease-modifying drug approved by the FDA to treat SMA, 11- year-old Dyla is growing stronger. After receiving her first loading dose in February 2017 (Spinraza is given in four initial does over the course of two to three months; thereafter, patients receive doses three time a year), Dyla showed immediate improvement.
“We’ve already seen her increase her strength. She’s been doing things around the house that she wasn’t able to do before. Simple tasks, you know, things that regular people take for granted that for us are big,” her mother says. That means Dyla is able to feed herself, dress herself and be more independent. Mom Dyla explains, “Cutting her food, for example, is something I always helped her with. She struggled to put pressure down on the fork just enough to cut it and not knock the whole plate down.”
Now, she says, “I love watching Dyla do things like cutting her own food now. I can see she must feel fantastic because she’s got this sense of independence that she didn’t have before. In the past, Marco and I would help her but now she says, ‘I’m good Mom and Dad. I’ve got it.’”
It’s also become easier for Dyla to get midnight snacks.
“I was about to go to sleep when I asked my mom if we could get a snack before bed. I opened the freezer and the tub of ice cream was falling out and I caught it with just one hand even though it was really heavy and really full. I don’t think I would have been able to do that before,” shares Dyla.
For families like the Gutierrezes who were only assured one thing in the past – the slow decline of their children – there is optimism and joy in even the smallest victories. “Other people want big changes. They ask, ‘Can she walk yet?’ And we say, ‘That’s not how this works,” mom Dyla says. “Our goal is to keep her airways and her lungs healthy.”
The experience of receiving Spinraza has been nothing short of life-changing for Dyla and her parents. “It is a dream come true. I told Marco the other day, ‘You know what? We can actually be 100% happy now.’”
“Sprinraza is going to ensure that Dyla’s going to have a better brighter future and that’s what Marco and I as parents want for her,” says Dyla.
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