Reagan
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Reagan is the happiest girl who always has a big smile on her face. At 9 months old she was unable to sit unassisted and was diagnosed with hypotonia, a global developmental delay, and we were referred to a number of specialists to find a diagnosis. After multiple rounds of genetic testing we found two variants in her genes that were attributing to her delays. In December 2021, Reagan was diagnosed with GRIN2A a focal epilepsy and speech disorder. To date, she has had abnormal EEGs but no known seizures. She is working with a great team of therapists (PT, OT, Speech, & Developmental Specialist) and physicians (Neurology, Ophthalmology, PM&R, & Genetics) to make sure she continues to progress.
Today, Reagan is 2.5 years old, she is starting to pull to stand and initiate crawling! She is starting to babble more and use her hands and arms for play and self feeding. While she still has significant delays we are continually grateful to see her progress. Over the past 6 months she has made huge strides and we are hopeful she will walk and talk with time. CureGRIN has been a valuable resource for us to connect with other families, educate ourselves, and raise awareness. Give a GRIN for Reagan!
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Drew
Drew is my 12-year old little force of nature! She has a constellation of diagnoses and challenges, but she is much much more than all those labels. Drew has Level 3 Autism (severe-to-profound), ADHD, Epilepsy, severe Emotional Dysregulation, Sensory Processing Disorder and, we just found out, the GRIA2 genetic mutation.
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Wellson
Wellson knows several colors, basically every animal noise and can count to 10 with help. These little milestones are HUGE!