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Posted On: 5th Feb 2018

Disabled Rights

Charley is encouraging people to make the most of their lives
Charley enjoys being creative and teaches craft classes
Neil Heslop from Leonard Cheshire Disability is supporting Charley's campaign

'Every day I need help to do the basic things such as going to the toilet, eating, drinking and getting out of bed.

 

'From the minute I was born it was always very clear that I was never going to lead a normal, traditional life. I’d always need support.' 

 

A young woman born with a rare disorder which affects her movement has become a Fixer to encourage young people to make the most of life despite the challenges they may face. 

 

25-year-old Charley Zakrzewski has Klippel-Trenaunay Weber syndrome, which causes muscle wastage and tissue enlargement. 

 

She told her story on ITV News Meridian (W) and ITV News London. 

 

She says: 'People that have different kinds of health conditions or challenges shouldn’t be made to feel guilty for wanting the normal things in life.

 

'Although I physically can’t move much, I’m not lazy and could never just sit and do nothing. It’s very important to me that I make a good role model. 

 

'I make the most of my life by having my pets, I am at university doing a degree in health and social care.

 

'I enjoy making things and being creative and I teach craft classes.' 

 

Charley's husband Paul has muscular dystrophy, a condition which results in the weakening of skeletal muscles. 

 

'We have to have personal care assistants with us all the time,' explains Charley. 

 

'We were determined to get married even though we were discouraged by a lot of people around us. I don’t see why people with disabilities have to ask permission.

 

'Everyone deserves to have someone to share their life with and everyone deserves the right to love.' 

 

 

Charley has teamed up with Fixers to create an information booklet aimed at young people with disabilities and their families. 

 

'I want to help young people understand what support is out there, how to apply for it and how to go about getting it. This information is often difficult to find,' she adds. 

 

Click on the image below to view Charley's Fixers booklet. 

 

 

Her campaign is supported by Neil Heslop, chief executive of the charity Leonard Cheshire Disability. 

 

He says: 'Charley's initiative is absolutely brilliant. Young disabled people helping other young disabled people to navigate their way through the benefits system and get the support that they need is incredibly helpful.' 

 

Charley adds: 'I’m hoping that doing this project will not only provide young people with information on what they are entitled to but give them the confidence to go after it.'  

 

To find other resources on this topic, and watch Fixers films, click on the image below.

 

Author: Molly Kersey and Lucy Thwaite

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Fixers is a project of the Public Service Broadcasting Trust, funded by the National Lottery through the Big Lottery Fund, and featured on ITV.

Charity No 298643    Company No 2194957