Zoe's STXBP1 Journey

For those of you who are familiar with our story, this is Zoe. We always knew our girl would achieve great things and surprise us and that she has. Zoe has suffered from multiple diagnoses and impairments in her short life including developmental delays, swallowing impairment, low vision, ataxia and balance impairment, and Speech apraxia. It wasn't until this July that we were able to receive an answer for Zoe's symptoms; STXBP1- Early Infantile Epileptic Encephalopathy caused by a micro deletion on the 9th chromosome. With only 200 or so children in the world having been diagnosed, there is very little information about this disorder. Some main characteristics that seem to follow these kids include nonverbal communication impairment and movement disorders. Seizures are common from birth for the majority though some remain seizure free. The reason we are asking for your help is that there is an upcoming meet and greet in Disney World May 15, 2018. I am sure that it will be a game changer for Zoe if she is able to meet other kids she can relate to. To be honest, Jarrod and I are really hoping we can connect with other families that have traveled a similar road. We are hoping to share ideas and raise awareness for these beautiful kids that we call our "STXers". Thank you for considering donating to our cause and much love from Zoe and the rest of the Cabral Family!