Amy's Story

Images Captured by Orange Passion Photography

Meet 7-year-old Amy. This Tiny Light is described by those who love her as 'joyful and in the moment' all of the time. She loves being read and sung to, going for walks, and watching Baby Einstein movies. 


Amy was physically 'normal' until she was a year and half. Her diagnosis of sodium channel genetic disorder came when she was three. Amy is fully dependent for all bodily functions, has minimal purposeful movement, and is non-verbal. She has medical vulnerabilities such as seizures and respiratory illness, orthopaedic concerns, and metabolic, endocrine, GI, neurological problems, etc. 


Amy’s parents knew there was no treatment or definitive prognosis associated with her diagnosis. Amy isn’t like other kids with sodium channel genetic disorder. She is unable to understand an explanation of her disorder. Her parents struggle to figure out how she is feeling physically and emotionally, as  she is unable to tell them. 


Amy's parents will likely outlive her. The fear of the unknown is great for everyone who loves and cares for Amy. She will likely never walk or talk, and will probably always need full-time care. Her parents wish that she will never have to suffer and that she will always have whatever care she needs. They have a strong faith and this helps them to concentrate on Amy, and not dwell on fears.


Story by Angela Stephen-Dewhurst