Violet’s Village: The Journey of a One-In-A-Million Girl

Violet was born with 3 rare one-in-a-million genetic disorders: Alternating Hemplegia of Childhood (AHC), Hemiplegic Migraine Type 2 (HM), and Congenital Muscular Dystrophy caused by Collagen 6 deficiency (UCMD). AHC is a movement disorder that is described as having every single neurological symptom that exists. Imagine having Cerebral Palsy, Parkinson’s, MS, Autism, ADHD, Alzheimer’s, etc all rolled into one disorder. It causes episodes of paralysis, dystonia (painful stiffening of limbs and body), involuntary eye-movements, seizures and more. Often, paralysis episodes cause loss of function or cognitive ability. This can be temporary or result in permanent decline. Violet has had a steep decline in recent years and is no longer walking, standing, or able to speak words she once knew. For more information on AHC, check out ahckids.org or watch the documentary on AHC at humantimebombs.com. Hemiplegic Migraine causes stroke-like migraines that cause facial drooping, paralysis, vision changes, nausea, and vomiting. These migraines can cause oral dysfunction, making it hard to eat. UCMD causes progressive muscle weakness, muscle wasting, respiratory issues, and joint contractures. This means Violet can fatigue quickly, have a hard time lifting objects, and her joints can get permanently stiff and less mobile. Living with any one of these conditions can be difficult, but Violet lives everyday with all three. Despite this, she is a happy girl filled with joy and love. Violet loves animals, high-fives, listening to music, dancing, and playing with spoons.