A Strong Future: Shamrockstar Maya Benefits from New Treatments for SMA

For Shamrockstar Maya, MDA is synonymous with one thing: Summer Camp. And her mother, Sapna, can’t say enough good things about it.

“The biggest impact MDA has had for us is Maya going to a fully accessible overnight summer camp. Since every camper has their own counselor I can rest knowing that Maya is well cared for,” Sapna says. “And she is included in all camp experiences. They never hear that they can’t participate. It’s also a great time for Maya to talk to her peers with muscular dystrophy. The girls become friends and as they get older they can be friends to lean on in those harder emotional times that even parents may not understand.”

The journey to understanding and acceptance is one that many families facing a neuromuscular disease can relate to. “It took us a long seven months to get Maya diagnosed,” recalls Sapna. “The hardest part was not knowing what was wrong. Confirming her diagnosis of spinal muscular atrophy type 2 was very hard but we fight a good fight for everything with Maya.”

Although she called the experience of learning her daughter had a progressive and terminal illness “truly devastating,” Sapna nevertheless knew her family had to become advocates for Maya’s needs.  “We got her the best care team, we have all her equipment needs met and she gets the therapy she needs. Once that was all taken care of, we continued life as we know it as normally as possible. In fact, Maya got a brother and sister after her diagnosis. We are a normal family with a different lifestyle. We try really hard to make things normal and not dwell on disease. We can do that now seven years later. It took us a few years to get there, though.”

Another thing that’s changed has been the availability of treatments for SMA, something that was still a distant dream when Maya was first diagnosed. Now, Spinraza, the first FDA-approved medication for SMA, may help Maya regain strength she has lost and halt the progress of the disease.

Giving Maya every opportunity to experience a full and happy life is paramount, even if that means confronting difficult truths about the impact neuromuscular disease has on the entire family. “Every aspect of our daily living is accommodating Maya in her wheelchair. You have to plan everything ahead of time, even just going to a friend’s house for a short visit. You also have to learn to live with your child’s disappointment of not being able to do things their peers can do.” But, Sapna says, “We also use this opportunity to point out things she can do that others cannot. We are more aware of other’s own battles in whatever conditions and diseases they may be fighting.”

We had the chance to chat with Maya, who is now 9, and find out what she likes to do in her spare time, what she loves most about MDA Summer Camp and how she #LivesUnlimited. Keep reading to learn more about this caring and charming Shamrockstar!

What is your favorite subject or activity in school? My favorite subject is math.

What do you like to do in your free time? I like to color.

What are four things most people don’t know about you? I have 15 cousins, I love Indian food, I take dance classes and I’m a great singer.

What is your favorite thing about MDA? I love going to MDA Summer Camp.

What is your favorite memory from MDA Summer Camp this year? My favorite memory is decorating my wheelchair.

What do you want to be when you grow up and why? A nurse so I can help people when they are sick.

How do you defy your limits and live unlimited? I have faith and I believe I can do amazing things. I try very hard and therapy really helps.

What is your favorite part of MDA Shamrocks season? It allows people to donate anyway they can.

Why do you think people should support MDA? So we can help fund treatments like Spinraza for SMA.

Do you have a favorite MDA partner you enjoy visiting, or have a special relationship with? Fire fighters!

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