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Montana, USA
9 years old
February 24, 2021

Ryker

Ryker is 9 years old and is the youngest of three boys. He suffers from Absence and Eyelid Myoclonia Seizures. Ryker is non-verbal and didn't walk till he was 3 years old. Now you can't stop him. He loves to go, go, go! 

Ryker's birth was different compared to his two older brothers. Ryker came out not breathing and purple. They swept him off to NICU and later brought him back to us once he was stabilized. They informed us all was well and he was a healthy baby boy. When getting discharged I informed the Pediatric Hospitalist that Ryker didn't cry once throughout the night and I was concerned. The physician shushed me and said, "You should be thankful for a quiet baby." For the next 9 months at Ryker's Well Child check-ups I expressed concern to our family physician that Ryker wasn't meeting his milestones like his brothers did. Again, they reassured me that Ryker was healthy and that I shouldn't compare kids. Finally at Ryker's 9 month Well-child check I expressed I was not comfortable with their answers and requested they refer us to a specialist to prove me wrong.  The specialist informed me he was cognitive of a 1 month old and his fine and gross motor skills were of a 3 month old. Even though the news was crushing, we immediately met with a neurologist and geneticist. For the next 4.5 years we did rounds of genetic testing only to get the same answer - all was normal. It wasn't until we requested the Whole Exome Sequencing (WES) that we finally received his diagnosis of SYNGAP1 when he was 4.5 years old. 

From 3-6 years old we struggled with severe behavioral and sensory issues. Which resulted in self-injury behaviors or attacking the person closest to him. This was a daily event, With ABA Therapy and proper medication we were eventually able to minimize his meltdowns. His meltdowns now are usually triggered only by sensory.

Ryker uses a communication device to communicate. He continues to work hard at his weekly therapies and is currently working on jumping, so he can jump into the pool this summer! 

Ryker is a smiley kid and loves all things water! He loves elevators, automatic doors, lights and currently curtains blowing. He has a funny sense of humor with some sarcasm and keeps his family and teachers on their toes. Ryker attends a regular public school that is K-8. He's Mr. Popular at school and knows it. He loves snuggles, tickle time with Dad and wrestling with his older brothers.

We are thankful for finding our second family in the SynGAP community through SRF.

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