THE mum of a nine-year-old girl who has two rare conditions is fundrasising for a new bed to improve her life.
Lindsay Rambridge’s daughter Alice has a rare chromosome disorder called 1q21.1 duplication and also suffers from agenesis of the corpus callosum, which means there is no bridge in her brain.
The smiling schoolgirl has mobility issues, gets confused very easily, has global development delay, struggles to communicate and is often very poorly.
She was diagnosed as a child but doctors think there may be something else wrong and they are carrying out tests.
Alice is in need of a new specialist bed, which costs more than £7,000.
Her current bed is no longer suitable but a new one can’t be funded by the local authority.
Lindsay, 37, from Preston said: “The new bed would make a difference to Alice because she would be safer. It would make a difference to me because I would be able to change her, she’s getting bigger and heavier, this will raise her up and I will be able to change her.”
Lindsay added: “She loves doing everything but she gets so tired. On a school night she is in bed at 5.20pm, she’s up at 7. When she’s not in school she has a nap in the day.
“She’s always so happy. I don’t think she knows there’s anything wrong with her. “She has no pain at all. She’s never cried a tear in her life.
“She can’t walk very far, she has a wheel chair for school and a special chair in the house. The new bed will last her in to her 20s, it will be safer for her.”
Lindsay admits it has been a difficult eight years but says the support from family and friends has helped. She added: “The future is very worrying. She’s 10 next year, it’s starting to be in my head more now, thinking what is she going to be like when she’s older, she’s not going to be independent.”
Family and friends have organised a host of fundraising events. On Saturday they will be running activities and stalls on the Flag Market in Preston.
And on Wednesday friend Helen Taylor, 28, from Preston, will host a fundraiser at Korova Arts Cafe in Preston to raise funds for the charity and her upcoming charity sky dive.
Children’s activities will run from 4pm until 6pm and from 7pm their will be a live music event for adults.
To find out more or to help the www.justgiving.com/SmileyAlice/ To sponsor Helen’s skydive visit: www.justgiving.com/helen-taylor47