22q11.2 Deletion Syndrome

Gianna

At just 20 weeks, while in utero, Gianna was diagnosed with 22q11.2 deletion syndrome. At just three days old she had nasal surgery, and then at two months old, heart surgery. To date, she has had 26 surgeries. Gianna, 14, suffers from seizures, feeding and swallowing issues, growth deficiency, bowel and bladder incontinence, cognitive delays, OCD, ADD, and Tourettes spectrum, among many other things. Despite this, Gianna is always enthusiastic; her favorite activity is cheering. 

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Louis, Ehlers-Danlos Syndrome

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Maddy, Beta-propeller protein-associated neurodegeneration (BPAN)