My name is Cameron and I am 4 years old. I was born with a congenital heart defect and had open heart surgery at just 8 weeks old. I was later diagnosed with a global developmental delay and an ultra rare gene mutation ADCY5.
This causes me to have a range of unpredictable movements that are painful, forceful and make my body contort in unnatural positions. They affect my entire body, even my larynx and my tongue!
It affects me 24 hours a day; during the daytime it restricts my mobility and the ability to perform simple tasks like other children. My night times are the worst as this is when I have my most painful movements and I am yet to experience a full nights sleep.
Doctors in the UK have tried lots of different drugs and tests to help me but so far nothing has worked. My mum and dad have found a specialist doctor in Canada who has developed a non invasive technique in Neuroplasticity and he thinks he has a strong chance of reducing the frequency and intensity of my movements, ultimately with the outcome of giving me more independence and a better quality of life.
My bedroom at home is fully padded to protect me from injury but when I go away to Canada I can not take my bedroom with me. I therefore need a specialist travel bed to keep me safe at night.
As always, any specialist equipment is very expensive to buy. My family have already come together to fund the trip but we still can't afford the travel bed.
Your gift, no matter how small, will help enable me to stay safe at night whilst I'm in Canada. Moving forward it will also mean I can stay over in hospital when I need treatments and go away on family holidays like my friends do.
There is lots of other equipment that I need like a disability buggy and an adapted car seat but the travel bed is the priority at the moment to enable the trip to Canada to happen.
My mummy, daddy and I can't thank you enough for taking the time to read my story and any donations given will be gratefully recieved.