<div>Our son, Rhett, was diagnosed with Spinal Muscular Atrophy (SMA) at just 2 weeks old. SMA is a rare neuromuscular disease that damages the motor nerve cells in the spinal cord, leading to muscle weakness and deterioration. It’s caused by a mutation in the SMN1 gene, which means the body doesn’t produce enough SMN protein—vital for muscle function. Without enough SMN protein, muscles lose strength over time, making it harder to walk, eat, and breathe. We are now preparing for Rhett to undergo gene therapy in the coming weeks, but there is still so much uncertainty about his prognosis and what the future holds for our family. 

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<div> Thanks to newborn screening, early diagnosis, and breakthrough treatments like gene therapy, many people with SMA are now living longer, stronger lives. Many ask if Rhett’s gene therapy is a cure. The answer is no—it is not. The gene therapy stops the disease from progressing by giving him the SMN1 gene he was missing. As powerful as that sounds, that alone can’t bring back muscle already lost. We are endlessly grateful to get Rhett treated before symptoms began, but for some, the disease had already progressed and the damage was done before receiving treatment. Hearing this diagnosis for our baby was absolutely heartbreaking and has changed our lives in ways we never expected. 

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<div>The costs associated with Rhett’s care are significant. We are facing medical bills and will need to travel for his treatments. We are reaching out to our community for help. If you are able, we would be so grateful for your support—whether through a donation, sharing Rhett’s story, or keeping our family in your prayers. Thank you for taking the time to read about Rhett and for standing with us during this incredibly difficult time.

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Inikpi Egbunu

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Trinity Amico

Erika Rauscher

Donald Pangrazio

Janice Green

Christopher Suriano

Roy Llamas

Jennifer Scott

Fred Merica

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Lori Merica

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Terri Turner

Support for Rhett’s SMA Journey

Support for Rhett’s SMA Journey

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