Sullivan's Story

At just one year old, Sullivan Brooke Smith has already shown the kind of strength that humbles even the strongest among us. Affectionately known as her family’s “Sunshine,” Sullivan lights up every room with her bright spirit and infectious smile. During her toughest hospital days, she finds comfort when her loved ones sing her favorite song — “My Girl” — reminding everyone that even on the darkest days, she is a light that refuses to dim.

Shortly after turning nine months old, Sullivan was diagnosed with Infantile Spasms, a rare and severe form of epilepsy. Since then, her journey has been filled with extraordinary challenges and incredible resilience. She’s endured countless days in the hospital, undergone countless therapies, and bravely faced an aggressive treatment regimen, including high-dose steroids, ACTH injections, Vigabatrin, IVIg infusions, and a strict ketogenic diet.

In July 2025, Sullivan underwent a life-altering brain surgery at Boston Children’s Hospital — a subtotal disconnection of three major lobes (left temporal, parietal, and occipital). This procedure, while removing functionality in those areas, gave her the best chance at stopping the seizures and reclaiming her future. Sullivan made it through surgery with amazing courage and has continued working hard in therapy five days a week with physical, occupational, speech, play, and vision specialists to help the right side of her brain adapt and grow.

Despite her bravery, the journey continues. Recently, Sullivan experienced her first suspected seizure relapse since surgery. Her care team at Boston responded quickly, scheduling her for an urgent inpatient EEG this week to monitor brain activity and guide the next phase of her treatment. Her family will fly back to Boston to continue fighting for answers and hope.

Through every setback and every small victory, Sullivan shines on — a beacon of strength, faith, and perseverance. This community has rallied around her, and we continue to ask for your prayers as her journey unfolds. Whether you’ve joined us by walking, donating, sponsoring, or simply saying her name in prayer — you are part of the light that surrounds Sullivan and her family.

Together, let’s keep shining for Sullivan. 💜☀️

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