This week, we want to help a 16 year old girl from Derbyshire called Alice.
Alice was born with a CASK gene mutation. It is a disorder which results in her being unable to walk, talk, hear, or see properly. She has seizures every day, and is fed via a tube from her stomach.
Alice lives at home with her mum, Joanne, and her brother Jordan. Joanne is a single mum and also works part-time as an early year educator for children with special needs.
Joanne has been working so hard to raise money so she can buy a new wheelchair for Alice. The wheelchair that was provided for Alice by the NHS is inadequate for her needs - each time Alice needs to move from the chair, it requires 2 people to help her. The only way Joanne can get her out is to lift her on her own, while holding her feeding pump. The chair is also very heavy, which Joanne finds hard to push. The result is Alice has no independence and Joanne has back problems - the situation isn't sustainable. If things carry on as they are, they will soon have to use a hoist to move Alice, which her mum said will be heartbreaking for her, as Alice still has the skills to do this herself - it’s just the wheelchair preventing her from doing so.
Joanne knows this wheelchair will make her daughter’s life so much better, and she used to be faced with the harsh reality that she may never have the money to get it for her. It’s an awful position for any parent to be in. Incredibly, Joanne has raised £3000 towards this wheelchair now, so the dream is becoming a real possibility - but she still has almost £1000 to go.
We want to take care of the rest for her.