Noah
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A Grandma’s Story
Noah was born at 35 weeks, apparently healthy, but had trouble regulating his body temperature. He was a very happy, beautiful baby, but he wasn’t meeting his benchmarks. We also noticed he had torticollis, which involves the muscles of his neck. The torticollis made his head flat, but by wearing a helmet, it helped this to resolve.
After many tests, Noah was diagnosed with GRIN1 and febrile seizures. Loads of therapies began like PT, OT, Speech, andABA. He alsoo wears ankle foot braces so he isn’t walking on his toes.
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Tristan
Tristan is the child we were told would never be. He is the last of eight pregnancies, our third child.
Zachariah
The diagnosis of GRIN gave us opportunity to reach out and we found our “new family”, a collection of families from all over the world living the same experience. Zach found his genetic Twin and even met him in 2019. We shared experiences, stories, nightmares. We were surprised at the range and degrees of physical and intellectual disabilities across the other Grin kids and Hopeful that one day Zach could do some of these things.
