Claira Beth will be celebrating her 10th birthday this summer! She has lived 5 years with the Syngap diagnosis. Reaching that diagnosis at 5 years old was a long stressful adventure. Her original diagnosis’ were global developmental delay, nonverbal, hypotonia, and mental retardation- all at 17 months. By 2 years old, she was diagnosed with autism. The neuropsychologist who diagnosed her made a stunning comment, “I wouldn’t be shocked, if sometime in her future, you came back to me and told me it [Autism symptoms] was genetic.” Then, 3 years later, after witnessing seizure activity, she was diagnosed with a genetic disorder, known as Syngap.
Today, Claira presents with atonic drop seizures, absence seizures, and eye flutters. She enjoys her service dog, Soleil, and he keeps her safe. He’s trained in tracking (she elopes), seizure alert, and behavior disruption. The behaviors are our biggest challenge. They can be intense most days, but she has the biggest heart and most beautiful smile!
Claira loves horses, cows, moons, fish, and swimming. She’s happiest riding... on anything really! She’s completely nonverbal, with a few simple signs and an iPad for communication. Weather permitting, you will find her in the pool most of the year if she’s at home!
She has opened our world in more ways than one, and puts a smile on everyone’s face she meets!