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Every baby in this video was later diagnosed with infantile spasms, also known as West syndrome. These subtle movements, often mistaken for startles or reflux, were actually seizures. What made them different was that they happened in clusters, often around sleep, and parents began to notice a pattern. These weren’t isolated jerks or one-off startles, they repeated over and over and they didn’t feel right. Infantile spasms are rare but serious. If left untreated, they can lead to developmental r
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Today, as we celebrate Lennon's 16th birthday, we're not just honoring our incredible son - we're raising awareness about Infantile Refsum Disease and advocating for research that could change everything. We hold onto hope that somewhere, someone will achieve the breakthrough that could offer healing to children and families facing this rare condition. While we pray it won't be too late for our beloved Lennon, we're committed to ensuring his fight creates hope for others who will walk this path
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