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Living With...Spinal Muscular Atrophy (SMA)

Re-defining Resilience: Harper & Hendrix Strong

by Kierra Perry, Special Tomato Social Media Consultant

If I told you that a hashtag and two 5 year old boys held the secret to resilience would you believe me? Meet Harper and Hendrix, two outstanding gentlemen with giggles that melt hearts and strength that defies odds. They’re marching to the beat of their own drums and inspiring each person they meet. Harper and Hendrix understand that they face a challenge that distinguishes their bodies from others their age. Their message to other children like them? To know that your possibilities are only as limited as your will power to march; and oh boy- do these two march. When Harper and Hendrix aren’t busy being superheroes, studying the fundamentals of kindergarten, or being goofy with brother Santana, they aim to bring light- and hope to a unique community of warriors. I interviewed Crystal, mom of Harper, Hendrix, and Santana, who shared with me how Harper and Hendrix use some of our Special Tomato products to help with the challenges associated with Spinal Muscular Atrophy, or SMA for short.

While having SMA puts these two in a venerable community of rare disease warriors, SMA is also robbing them of everyday independence such as sitting upright, walking, dressing themselves, etc. Harper and Hendrix lack an essential protein that allows for proper muscle function, but they are ANYTHING but weak. Take a brief scroll through the instagram feed of these two and I tell ya- If you could bottle up and sell the joy that radiates from these boys, you’d be a millionaire! When I asked Crystal what it’s like to see her boys challenge adversity every day with a smile; her response was thought-provoking. “They can feel everything”, she said. “But they can’t do.” Crystal elaborated, “I’m just so proud of my boys. They are so strong.” In one way or another, we all struggle to capture our own glimpse of resilience, occasionally feeling paralyzed by the fear that we just can’t do. Where we become entrenched by hardships, others like Harper and Hendrix have figured out the key to powering through any obstacle. Crystal shares, “Harper and Hendrix can do anything they want to do, they just have to take a different path.” Whether it’s grasping a marker in their own way, or driving 7 hours for a medical treatment, this fiery duo have a message to galvanize the world with. These boys are inspiring every soul they meet by simply taking a unique approach to the challenges they face. Want to be #HarperandHendrixStrong in just 3 steps?

  1. Recognize what isn’t working, and find ways to challenge it!
  2. Proceed with curious enthusiasm.
  3. Should you then meet discouragement, introduce yourself kindly as optimism, and invite compromise.

Harper and Hendrix approach the world as such every day, and I think they’re onto something. On the topic of advocacy, Crystal shared with me the importance of conversation. Should you find yourself curious about Harper and Hendrix’s condition, they will have no problem answering your questions. In fact, the whole Ramos family invites conversation with enthusiasm. Crystal encourages her boys: If someone is staring at you because you look different than them, say Hi!” she adds, We’ve had kids come up and ask things like “What happened to your legs?”, and the boys feel completely comfortable answering these kinds of questions. The more we approach questions with enthusiasm, the more we chisel the barriers of stigma. That very enthusiasm for curiosity is what #HarperandHendrixStrong is all about, and Special Tomato deeply appreciates Crystal and the whole Ramos family for allowing us to share a piece of their SMA journey with us. You too can follow their journey on Facebook @HarperandHendrixStrong24 and Instagram: @HarperandHendrixStrong

Thank you to Crystal Ramos for allowing us to feature Harper and Hendrix as part of Special Tomato’s Family Feature Interview Series.

At Special Tomato, we aim to innovate products as resilient as the children who use them. If you have a #SpecialTomatoStory like Harper and Hendrix you’d like to share, email us at connect@specialtomato.com.