What you’ll do

About Me

I am a 9‑year‑old boy who is non‑verbal and non‑mobile, but I express myself through facial expressions and the noises I make. I have extensive care needs and require support and supervision 24 hours a day. I am visually impaired, so keeping me informed about what’s happening around me is very important—it helps me feel safe and reduces the risk of me becoming startled, which can sometimes trigger a seizure.

I live at home with my mommy and daddy. I’m an only child and am surrounded by a loving, supportive family.

When I was a baby, I experienced infantile spasms and was diagnosed with West Syndrome. In 2020, I was further diagnosed with Proud Syndrome, a rare neurological condition characterised by severe intellectual disability, agenesis of the corpus callosum, and seizures. I experience pain from dystonia, which may be linked to headaches caused by my earlier in...