AN ORDINARY DAY
KIDS WITH RARE 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.
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Darus, Phelan-McDermid Syndrome
Addie, Related Intellectual Disability Syndrome
Kelly, PACS1 Syndrome
Wyatt
Clara
Louis, Ehlers-Danlos Syndrome
Maddy, Beta-propeller protein-associated neurodegeneration (BPAN)
Miriam & Mohammad, NGLY1
Ethan, Angelman Syndrome
Ian, MCAP & PMG
Sean, ALD, X-linked Adrenoleukodystrophy
Quinn, Polymicrogyria
Cassie, Marfan Syndrome
Emily, Sanfilippo Syndrome
Ava, SATB2-Associated Syndrome
Gianna, 22q11.2 Deletion Syndrome
Brian, Ataxia -Telengiectasia
Josie, FoxG1
Zoey, Chromosome Deletion Syndrome of the 2Q32 Chromosome
Jonathan, Mowat-Wilson Syndrome
Nico, Evans Syndrome
Mackenzie, Tay Sachs
Jamesy, Duchene Muscular Dystrophy
Brynn, Rett Syndrome
Daniel, Glass Syndrome
Alexandra & Jonna, Gastroparesis, Crohns & Rheumatoid Arthritis
