Natalie and her sister Avery do a lot of things together, so it’s no surprise they appear on an MDA Shamrock together. Natalie and her family found MDA when they we running out of hope for answers. Julie, Natalie’s mom, says, “MDA represents a strong community that I struggled to find while she was undiagnosed. Once we received her diagnosis of Bethlem Myopathy at the age of 6, we finally had a group and community to belong to where we related to others. MDA means a place where we feel understood. It’s a place to go to when you don’t know where else to go.”
The road to a diagnosis for Natalie was longer than most. “Natalie went to specialists her entire life and not one doctor ever gave us a direction nor a clue as to what her symptoms could be,” Julie says. “We let it rest after age 4, and I felt like we may never know. I was trying to make peace with that. At the encouragement of her Physical Medicine and Rehabilitation doctor, we saw a different neurologist and for the first time in her life we heard the words, ‘I think I know what this is.'”
Dealing with a neuromuscular disease has been challenging for Natalie’s family. Mom Julie says of the diagnosis, “It’s changed the entire dynamic of our family. She received her diagnosis and first wheelchair in the same week. We had to wrap our minds around this new disease we knew nothing about and adapt to a wheelchair, ramps, new transportation, and remodel our home at the same time.”
Julie juggled worries about how muscular dystrophy effected not only Natalie but her little sister Avery, as well.
“And there was the added stress it takes on a marriage when you have to discuss topics you never want to discuss about your child. Problem solving and functioning exhaustion became the new normal.”
But eventually, Julie says, you reach a kind of peace. “Slowly you find a groove. You develop a strength you didn’t know you had because your child deserves that. [I love] watching her adapt so gracefully and finding her little place in the world. ”
We had the chance to chat with Natalie, who is now 10, 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 spirited Shamrockstar!
What do you like to do in your free time? I like to play soccer and play with my sister.
What are three things most people don’t know about you? I play soccer, I used to be able to walk, and I grow a garden.
What is your favorite thing about MDA? Camp!
What is your favorite memory from MDA Summer Camp this year? Meeting my counselor.
What do you want to be when you grow up and why? I want to be an architect and build accessible homes and buildings.
How do you defy your limits and live unlimited? I do things that people think I’m not going to be able to do, I just do them differently.
What is your favorite part of MDA Shamrocks season? Going to all of the participating stores and taking pictures.
Why do you think people should support MDA? To find a cure for our disease and get to be able to do stuff at camp that we can’t do anywhere else.
Do you have a favorite MDA partner you enjoy visiting, or have a special relationship with? Lowe’s in Woodlands because they were so happy when I came to visit their store.
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