You may have heard the saying, “It takes a village to raise a child.” Truer words have never been spoken, especially for those raising a child with spinal muscular atrophy (SMA)—even after receiving treatment. Donovan, who was diagnosed with SMA Type 1, received ZOLGENSMA^® (onasemnogene abeparvovec-xioi) when he was about 2 months old. While the treatment has given him a chance to grow, gain strength, and reach new milestones, he still has SMA. Over the past 4 years, Donovan has had his own village helping him. It includes different types of doctors, therapists, and other care providers, all working together to make sure he gets the care he needs.

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Building a care team after diagnosis

Donovan’s care team has grown since he was diagnosed with SMA. At diagnosis, Donovan’s parents, Matt and Laura, were still learning about SMA and what their son would need to successfully manage his disease. “As the parent, I’ve come to believe that it’s my job to be the quarterback for my son’s care,” shares Matt. “But I don’t believe it’s a realistic or even helpful expectation to have everything in place at diagnosis or even all at once. It will build over time.”

Fortunately, they live near a clinic specializing in SMA and could start building their team immediately. “The clinic has a number of specialists and makes referrals if they don’t have a certain resource available,” says Laura. It was through this clinic that Laura and Matt found a general practitioner of complex care. The doctor is familiar with complicated diseases like SMA and continues to be Donovan’s primary healthcare provider.

They also meet with a pulmonologist to help ensure Donovan is prepared with breathing support when he needs it. “We have a few machines to keep his lungs healthy,” Laura explains. “We use a bilevel positive airway pressure (BiPAP) machine when he is sick, which helps make breathing easier. His cough assist machine and a suction machine we use on a more regular basis. Mostly we use them when Donovan is feeling fatigued or we can tell he’s a little uncomfortable. We also use a nebulizer anytime he’s sick.” Additionally, Donovan sees an occupational therapist weekly to help him acclimate to new equipment as well as a physical therapist who focuses on getting him more mobile.

Evolving the care team

As Donovan continues to grow, his care team evolves to support new demands. “It’s really important to have multiple doctors and therapists involved in his care team because he is growing and things manifest differently,” explains Matt. To address concerns about weakness in the muscles supporting Donovan’s spine, his parents added an orthopedist who uses massage-like techniques to provide comfort. To help ensure that Donovan gets the right amount of calories to manage his weight, a nutritionist monitors Donovan’s nutrition through a personalized plan. Donovan has a gastrostomy tube (G-tube) to help get those calories he needs. His parents also employ an in-home nurse. “She’s with him 8 hours a day and handles his day-to-day needs. It helps to have another experienced person on hand when we need to focus care, like when Donovan is sick,” explains Matt.

The best advice

Because no one knows what the future holds, Matt and Laura encourage other families to use all of the services and care that are available to them to give their child the best possible chance for the future. “It’s okay to have people who are SMA experts helping,” says Laura, “But it’s also important to have people who will work and listen to us because we know Donovan best. It may seem like a lot of people are involved, but when you’re dealing with SMA, having a lot of minds working together to solve problems, offer solutions, and suggest resources is essential.”

Start building your care team today by working with your doctor to find the specialists that your child needs.