Charlie's Story


24 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.
 

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"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."
 

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"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.

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"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. 

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"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."
 

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