We are trying to raise vital funds to get Abi mobile. She has a rare chromosome disorder called Pallister-Killian Syndrome and is unable to move around independently. We are in need of a Wheelchair Accessible Vehicle to be able to transport Abi whilst she is seated comfortably in her wheelchair. We also need funds for various other equipment such as ceiling tracking, hoists and bathing facilities.
Pallister-Killian Syndrome is very rare with only approx. 200 cases reported worldwide at the time of Abi's diagnosis in 2010. The syndrome varies greatly in severity with some children attending main stream schools to others who have profound developmental delay. Unfortunately Abi is on the more severe end of the scale meaning we have a lot of challenges to overcome as she gets older and heavier! The main aspects of the syndrome which affect Abi include;
- Hypotonia - low muscle tone which means she cannot stand or sit up without full support
- Epilepsy - although controlled by medication her seizures occur anywhere from once to five or six times per week
- Global development delay - non verbal, unable to communicate
- Scoliosis - curvature of the spine
- Vision and hearing impairments
We don't know what the future holds for Abi but as she shows no interest in moving about independently at the age of 5, we can only assume that she will not learn to support her own weight or sit unsupported. Regardless of this she is such a content, happy little girl who can put a smile on anyone's face!
Abi's comfort and quality of life is our number one priority and so throughout the coming year we will be taking part in various events to try and hit our financial target by November 2016.
11th September 2016 - Awaiting confirmation for entry into the Great North Run Half Marathon! I can't even run a mile right now so this will be a huge challenge....the 8 month countdown begins!
MORE TO BE ADDED SOON!