In recognition of National Sibling Day, 10 year old Chloe Horrobin shares her story of life living with a sibling who has a life-altering genetic condition. The story is entirely in her own words, honest and truthful.
My name is Chloe Horrobin. I am 10 years old. My brother has Norrie disease which caused him to be visually impaired from birth and later on he may need to wear hearing aids.
We go to the same school and sometimes other children refer to me as Josh’s sister which is quite annoying as I am Chloe. I’m studying for my SATS in May and have to go to school early but sometimes it’s hard to get Josh to get in to the car. When Josh uses his cane people stare.
I live with my Mum and Dad and brother in England. There are good and bad things about having a brother with a disability. He can be slower than us so we have to leave the house early but the good things are he is really persistent and he doesn’t give up easily.
Josh goes to a normal school and has as many friends as you and me. He is quite normal really except from he has Norrie disease.
Norrie disease is a rare genetic disorder that causes dual sensory impairment in boys. Affected children are born blind or go blind very early in infancy, while progressive hearing loss can start as early as five years of age. Half of boys affected also experience developmental delays and learning difficulties.
Last year, a Jeans for Genes Day grant helped fund the creation of the first patient group in the UK dedicated to supporting families affected by Norrie disease.
Please wear your jeans on Friday 22nd September and support thousands more children like Chloe and Josh who are living with the daily challenges of a life-altering genetic condition. Sign up for your free fundraising pack today www.jeansforgenes.org.