Charlie's Story


22 year old Charlie, who visits Jacksplace, was born with Ataxia-Telangiectasia, a rare condition that affects the nervous system, immune system and makes the risk of getting various cancers high.

In his own words, Charlie shares his story with us.
 

"My name is Charlie, I’m 22 years old and my life has been a rollercoaster.

"I was born with Ataxia-Telangiectasia but wasn’t diagnosed until I was three and a half. In my first year of life I had nine ear infections. I started walking when I was just over one. My walking didn’t get steady though and my Mum was concerned. At my 18 month check-up I was referred to a paediatrician. By then I was already receiving physiotherapy as I had low muscle tone. The paediatrician then referred me to a neurologist in Bristol. After a few visits they did some blood tests to check for rare conditions. That’s when they finally found out that I had Ataxia.

"I was able to walk until I was eight, but then I started falling over a lot and I needed to use a wheelchair - I am now a full time wheelchair user and need assistance with all transfers.

"I have to take antibiotics every day as I have a low immune system. A year and half ago I had DFSP skin cancer which I had to have removed. This again is very rare and will need to be monitored for a while.

"Having Ataxia-Telangiectasia means I am at high risk of getting various cancers. I’m not going to lie, it’s tough."
 


"Thankfully I have a fulltime carer to take me to the places I want to go and help me keep active. I have a physio programme to complete every day and also a standing programme, which I have to do for an hour and a half each day.

"When I went into my wheelchair at the age of 8, I got very depressed as I couldn’t do things like everyone else."


"I have always loved sports and I now play wheelchair football for Portsmouth.


"I started attending Jacksplace about a year ago and I felt comfortable straight away. I have overnight stays, which I love.

"I like Jacksplace because they let me do my own thing and let me make my own decisions. They listen to me and take everything I say on board."


"I attend day service every Thursday and also access counselling services, to help me feel more comfortable with my disability. I have met some new friends as well as old friends and it’s nice to be around others the same age as me and who are in similar situations. 


"At Jacksplace I feel I can fully express myself and I feel completely relaxed. Simply, I trust the staff, and on top of that they’re so lovely."