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We are a small group of less than 100 families worldwide who have found each other through Facebook.  We started with a group of about 6 people in 2017, mostly with young children.  We welcome new members and try to give them information and support as they first learn about a rare condition with no real treatments.  Over the years, we have heartbreakingly seen several children in our small group pass away due to this condition, some whose lives we have all followed as they have been chronicled in our group.  For others, there are many hard struggles with very complex medical issues that can be overwhelming to families, including medication-resistant seizures, dystonia, frequent hospitalizations, and a variety of disabilities.  As we are beginning to fund research into this condition and possible treatments, we urgently need to raise additional funds to support and advance these projects so we can find treatments soon.

Family Time
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