Olivia's daily fight
Thanks for taking the time to visit my JustGiving page.I have a very rare debilitating degenerative neurological disease called CDKL5. There are less than 800 worldwide.This disease causes me to have multiple severe learning disabilities that effect me in every part of my life.
Epilepsy caused by CDKL5 is my biggest fight as i have over 20 severe fits per day and these are destroying my life slowly. I am in Non Convulsive Status and have Lennox Gastaut Syndrome. The epilepsy effects everything about me and i am not able to eat and i am fed by a tube in my tummy.
I am also non verbal - so i can not speak. I have been assessed for a specialist eye gaze computer that will help me communicate my wants and needs better to help people understand me but this is over £4000 .
I love sensory play and would also like a soft play area in my bedroom so when i am not feeling great and need quiet time i can relax in a lovely , calming room. I also have autism and sometimes I have external sensory overload which agitates me and upsets me so a quiet relaxing area would be amazing to help me relax especially as the over stimulation will make me have a seizure.
If you have any questions about Olivia please feel free to ask !
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.
On the 14th June 2015 my mums ( Wendy Black and Mandy Black), Claire White, and Alex Stobbs, are all doing the colour rush fun run to help raise more funds towards our goal. Please feel free to donate, no donation too small. David Stobbs will also be helping to raise funds by completing various tasks through the year. Watch this page for more updates.