Just4Children is trying to raise monies for urgent and vital adaptions to Cory’s home to improve the quality of his life.
Hi, my name is Cory!
I am 7 years old from Brixham in Devon. I was born with moderate to severe hearing loss and had my first set of hearing aids at 9 weeks old. I was developing well and enjoying life until at 5 months old I started having Infantile Spasms, a rare type of epilepsy. The usual drugs didn’t work and I lost all of my developmental skills within a week of being at the hospital. I even lost the ability to smile! I couldn’t move and would cry a lot.
The Doctors didn’t know why the drugs weren’t stopping the seizures and Mummy noticed I wasn’t looking at things anymore. I was then diagnosed with Cortical Visual Impairment and was registered blind before my first birthday. I became a ‘deafblind’ baby.
The drugs failed to ease my epilepsy, I was left with severe learning difficulties and very limited mobility. I became extremely tactile and defensive and wouldn’t let anything touch my hands. The world was very scary and frightening. I didn’t know what was being fed into my mouth and that scared me too! I developed severe food aversion and after many years of Mummy and the school trying to encourage me to eat orally, I had to have a gastrostomy tube (PEG) fitted. I had lost a lot of weight and needed help!
I don’t have a formal diagnosis yet. I am part of two genetic studies which have yet to find a cause after many years of waiting. My Mummy says, “I am a very unique little boy and that I love life!”
The proposed extension would greatly improve the quality of life for Cory and our family. As Cory is getting older and heavier, a ground floor bedroom and wet room with hoist will mean that we won’t have to carry him up and down the stairs and in and out of the bath. This will save our backs and keep Cory safe. A storeroom for all of Cory’s equipment will mean more space for the family and a purpose built sensory room will provide Cory with a safe area to explore and seek out stimulation.
Please help us by donating what you can to help make these vital adaptions to our home.