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<div>My son, Zavian, is a bright, funny, and resilient little boy who loves swimming, playing with toys, and music. Behind his smile, however, is a daily battle with childhood-onset myotonic dystrophy — a rare, progressive muscle disorder that affects his ability to move, speak, and perform everyday tasks most kids take for granted.
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<div><strong>Our Story:</strong>
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<div>In the spring of 2021, Zavian was first diagnosed with Autism and low muscle tone. We began basic therapies — speech, physical, and occupational — and in early 2022, he received an official medical diagnosis of Autism via Telehealth, as COVID restrictions prevented in-person evaluations.
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<div>He attended a part-time school program and had at-home therapies, and we saw some improvements — especially in how he engaged and understood us. But his speech still wasn’t coming, and I couldn’t shake the feeling that we were missing something.
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<div>In early 2024, I scheduled an in-person re-evaluation with his neurologist. After the exam, she ordered an MRI — something I was already planning to request. The MRI came back abnormal, and that began a long, emotional path of genetic testing.
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<div>First came the CMA and Fragile X tests — both negative. Then the Whole Exome Sequencing test — also negative. Our final option was the Whole Genome Sequencing test. This was the last test available to us, and if it didn’t yield answers, we wouldn’t know what else to try.
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<div>Thankfully — and emotionally — we finally got an answer: childhood-onset myotonic dystrophy. We learned that this rare, progressive muscle disorder is the underlying cause of his Autism, and he doesn't have low-muscle tone; he has dystrophy. It affects his muscles, his nervous system, and possibly causes discomfort or pain he cannot express.
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<div>This diagnosis adds an entirely new layer to our journey. We are now back in therapies, and I have taken time off work to navigate these next steps so I can give Zavian the best possible start in life. Every decision now is about giving him comfort, opportunities, and hope for his future.
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<div><strong>Why We Need Help:</strong>
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<div>While we work hard to give him the best life possible, the medical costs are overwhelming. Many essential therapies, equipment, and travel expenses to see specialists are not covered by insurance.
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<div><strong>Your donation will help cover:</strong>
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<ul>
<li>Specialized physical and occupational therapy sessions
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<li>Adaptive equipment to support mobility and independence
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<li>Breathing and speech therapy tools
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<li>Travel and lodging for specialist appointments
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<li>Emergency medical costs that arise unexpectedly
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<li>Every contribution — big or small — brings us one step closer to making his daily life safer, more comfortable, and filled with moments of joy.
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<div><strong>Our Promise to You:</strong>
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<div>We will post regular updates so you can see exactly how your generosity is making a difference. Whether it’s a new piece of equipment, a therapy milestone, or a smile after a tough day, we want you to know the impact you’ve had on Zavian’s journey.
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<div><strong>Graitdue:</strong>
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<div>If you’re reading this, thank you for taking the time to learn about my son’s story. Even if you cannot donate, simply sharing this page helps us reach someone who might be able to.
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<div>From the bottom of our hearts, thank you for your kindness, compassion, and belief in brighter days ahead for Zavian.
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samia Norwood

David Sanders

Anonymous

Charlene viscardi

Chris Bieter

Stefanie Arkeketa

Luma Simmons

Leonard Duke

Noel Winkler

Sarah Willmore

Sheree McLafferty

Hope for Zavian: Living with Childhood Myotonic Dystrophy

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Hope for Zavian: Living with Childhood Myotonic Dystrophy

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