Care Assistant

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 infantile spasms. In September 2025, I was fitted with a Vagus Nerve Stimulator (VNS) because medication alone wasn’t enough to control my seizures. I always carry my magnet with me—this is very important to manage my seizures safely. When I have a seizure, I need someone to stay with me, speak gently and reassuringly, and make sure that I am safe throughout. I need full assistance with continence care, including the use of single‑use catheters and incontinence pads.

Sometimes, I can feel anxious, so I benefit from emotional support—talking to me softly, describing what you can see, and telling me about different textures helps me feel calm and included. I receive support and respite from Hope House Children’s Hospice. I no longer attend school because it was felt that it wasn’t safe for me, and my parents are working to arrange home schooling, which will help me stay healthy and allow me to learn and enjoy activities in the comfort of my own home.