Our Story
Hazel and Hadley are identical twins whose journey has been defined by strength, resilience, and the unbreakable bond they share. Born prematurely at 32 weeks, they spent more than two months in the NICU, bravely navigating their earliest challenges. In the beginning, it appeared they were meeting common developmental milestones, but as their first year progressed, we began to notice a gradual loss of certain physical abilities. Initially, doctors attributed these changes to their premature birth. However, in January 2022, a referral to a neurologist deeply involved with the Spinal Muscular Atrophy (SMA) community led to genetic testing—and a life-altering diagnosis. Both Hazel and Hadley were confirmed to have SMA, a rare genetic disorder affecting motor neuron function.
About SMA
Spinal muscular atrophy (SMA) is a progressive neurodegenerative disease that affects the motor nerve cells in the spinal cord and impacts the muscles used for activities such as breathing, eating, crawling, and walking.Each year, thousands of infants in the U.S. and around the world are born with SMA.SMA impacts children , teens, and adults from every background, race, and gender. There are several approved treatments for SMA, but we do not yet have a cure.
Our Treatments
At 15 months old, the twins received Zolgensma, a one-time gene therapy infusion that works to replace the missing or non-functioning gene responsible for SMA. A year later, they began daily doses of Evrysdi, a treatment designed to increase the production of the essential SMN protein, helping to support motor function. Now four years old, Hazel and Hadley continue with their Evrysdi regimen, daily physical therapy, and attend intensive therapy sessions throughout the year. We are hopeful continued treatment, physical and occupational therapy will allow Hazel and Hadley the ability to one day walk on their own.
Your generous donations allow for the opportunity to attend intensive therapy sessions and provide much needed equipment that is not covered by insurance.
EVENTS
Join us for our Serve for Strength Pickleball Tournament on August 9, 2025 at Oasis Pickleball Club in Rockwall, TX.
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