Rock FM's Smiling Alice's Appeal
Fundraising for Rock FM Cash for Kids
We give grants to help local kids in need to give Lancashires kids a brighter future
Charity Registration No. 1122062
Alice was born with the rare chromosome disorder - 1q21.1 duplication and agenesis of the corpus callosum. I didn't know this when she was born.
After a rough couple of months of her not sleeping I thought she just didn't like me as she didn't like me holding or cuddling her. It was heart-breaking. My doctor became concerned as she was...n't smiling or moving much so he sent us to a paediatrician. She took some chromosome tests which would come back in three months. In that time Alice became happier. She started on solid food and sleeping better. She still wasn't rolling, trying to pull herself up or lifting her arms.
Alice was nine months old when the tests came back clear. So she got to see a physiotherapist while waiting for a C.T. scan which came back clear so they did a MRI. She was seventeen months when she had the MRI. She still wasn't sitting up or moving her hands much. We went for the results and found out she had agenesis of the corpus callosum (no bridge in her brain). They told me that she may not sit, talk or walk. A month later she started sitting!
At five she started saying odd words and six months later she started walking!!! She finally got diagnosed in 2011 with 1q21,1 duplication.
Alice also has epilepsy ,global development delay, problems swallowing, sensory difficulties, eczema, low muscle tone and poor immune system, which causes Alice to be ill very often.
It has been a hard eight years, she has gone through so much but she still manages to smile lots. She is an Amazing, Loving, Inspirational, Courageous and Encouraging little girl. She never ever gives in and reaches for the sky. She can put a smile on the most miserable persons face. She is my sunshine and little star.
Alice needs a new special needs bed and unfortunately this cannot be funded by Social Services as it costs £7276, therefore we are trying to raise the money to buy this.