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All proceeds will go to Preston's Non Profit Trust Fund to help meet his needs.
Preston's day may begin before the sun rises, not because we chose it, but because sleep disturbances are a part of the package for Syngap1 . From the moment our child opens his eyes, the world presents challenges most adults would find overwhelming.
Mornings for Preston can be unpredictable while his caregiver starts with a breakfast via a bottle of a host of medications and a homemade nutritional puree which he will eat by bottle. Preston’s day starts with tremors, struggles with walking without falling due to low muscle tone, and seizures. Preston displays 5 types of seizures; however, 3 types are prominent and present daily. Preston exhibits up to 40 absent seizures, focal seizures, and eyelid myoclonia seizures within his day. Medications do help keep the other seizures at bay; however, their side effects come with their host of issues as well. Preston’s communication skills are extremely limited, building his frustration quickly. This is due to his brain processing the world differently, chaotically, and sometimes painfully. Preston exhibits self-harming behaviors and struggles to balance sensory overload, confusion, and fear daily.
Preston’s days are typically dominated by daily therapies of speech, occupational therapy, physical therapy, and behavioral therapy. Simple milestones are celebrated; however, oftentimes abilities are lost due to seizures, and we must continually work to get them back. Low muscle tone affects his fine motor and gross motor abilities to do simple tasks like walking stairs or opening a container. Sensory-seeking behaviors often come with head banging, smacking, or deep pressure. Preston does not feel pain like a typical child, so his self-injurious behaviors are always concerning. He currently wears a helmet full-time to help protect his head from himself. Socializing is difficult; playgrounds and classrooms are minefields of overstimulation for him, typically causing him to have behavioral meltdowns.
Preston endures challenges every moment of every day that make life difficult and even brutal at times; however, his joy is pure and even contagious. His strength is unmatched, filled with purpose, and is full of the deepest kind of love a child could possibly have.
We are fundraising to support Preston's ongoing medical and therapeutic needs. Preston, our beloved child, faces daily battles with Syngap1, a rare genetic disorder.
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