An Ordinary Day - Kids with Rare Genetic Conditions
An Ordinary Day documents the personal lives of courageous children living with rare genetic conditions and the families who love and support them at all costs. While 1 in 10 Americans lives with a rare genetic condition, these realities are often overlooked. This book brings compassionate attention to lives shaped by resilience, care, and perseverance.
Emily, Sanfilippo Syndrome
Darus, Phelan-McDermid Syndrome
Kelly, PACS1 Syndrome
Addie, Related Intellectual Disability Syndrome
Clara
Wyatt
Cassie, Marfan Syndrome
Louis, Ehlers-Danlos Syndrome
Gianna, 22q11.2 Deletion Syndrome
Maddy, Beta-propeller protein-associated neurodegeneration (BPAN)
Miriam & Mohammad, NGLY1
Ethan, Angelman Syndrome
Jonathan, Mowat-Wilson Syndrome
Mackenzie, Tay Sachs
Brian, Ataxia -Telengiectasia
Ava, SATB2-Associated Syndrome
Ian, MCAP & PMG
Sean, ALD, X-linked Adrenoleukodystrophy
Josie, FoxG1
Zoey, Chromosome Deletion Syndrome of the 2Q32 Chromosome
Quinn, Polymicrogyria
Jamesy, Duchene Muscular Dystrophy
Nico, Evans Syndrome
Brynn, Rett Syndrome
Daniel, Glass Syndrome
Elena, BRWD3