The family of a boy with a life-limiting illness are set to walk 100 miles blindfolded to better understand his condition.
Oscar Jealous, nine, from Kingstanding in Birmingham, was diagnosed with life-limiting Batten disease in February 2020.
His parents, Alex and Dani Jealous, will take on the challenge from 26 to 28 August, raising money for Acorns Children’s Hospice, which has supported them since Oscar’s diagnosis.
“The idea is to walk 100 miles in Oscar’s shoes and try to emulate what he goes through on a day-to-day basis," they said
Oscar’s condition means he has epilepsy, cognitive disfunction, due to the fact that it’s a neurogenerative disease and his brain isn’t working how it’s supposed to, which also affects his muscles, and he’s fed through a gastric tube,
“But all of this is amplified and made 10 times harder because his disease has caused him to go blind and he’s a nine-year-old child who has no visual representation to help him calm down or focus.
“So, doing the challenge continuously with the sleep deprivation will represent the mental aspect and the fatigue as things stop functioning, and the blindfold will mirror his blindness.”
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