On May 3, our close friends Ben and Erin Prosser and big brother Sam welcomed a beautiful baby girl, Lucy, into their little family. Unfortunately within her first week of life, little Lucy began having seizures and infantile spasms. After a battery of tests and numerous stints in the hospital, Lucy has been diagnosed with a rare neuro-developmental disorder called STXBP1 encephalopathy.
There is no sugar coating that this is a devastating diagnosis. STXBP1 encephalopathy affects ~1 in 100,000 babies and is caused by a mutation in a gene called STXBP1 that is required for brain cells to properly communicate with one another. There are less than 200 cases of this disease diagnosed, so information is limited, but kids with STXBP1 encephalopathy do not develop normally and typically show severe intellectual disabilities and impaired motor skills. Some learn to walk unassisted, few learn to say more than a couple of words. There are currently no cures.
Although Erin and Ben are successful professionals in their respective fields with a strong village of supporters around them, the uncertain and serious nature of Lucy’s diagnosis means that they are going to have to contend with significant, immeasurable, and long-term medical costs to ensure the best life possible for their girl. That being said, we would greatly appreciate any financial contribution you might be able to make to support baby Lucy and lessen some of the burden on our incredible friends.
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