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!"
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Joined 3 - 4 - 2020