Nathan and Marie Cavalier
Marie's challenges for Annie
Fundraising for Sturge Weber UK
Story
Thanks for taking the time to visit my JustGiving page.
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 and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So please dig deep and donate now.
Annie my beautiful daughter has Sturge Weber Syndrome. She quite different to most of the children who have this rare neurological disorder as she doesn't have a port wine stain on her face. She unfortunately has clusters of excessive blood vessels on her occipital and parietal lobes and the rear left side of Annie's brain has also shrunk.
Unfortunately Annie does suffer as a result of this syndrome in that she has uncontrolled epilepsy. At her worst she was having 140 seizures everyday despite being on three anti seizure drugs. She was assessed for brain surgery last year and on 18th September 2012 had an 8 hour operation at Leeds General Hospital and had her left occipital lobe removed. This has left her with the loss of sight from the centre of both her eyes to the right. She has improved on the seizure front although is now back to fitting everyday upto 40 times a day.
As there are more blood vessels on the parietal lobe we are now assessing Annie as to whether further surgery is needed. The result of this should it be needed is Annie will lose mobility on her right side. We go back to Leeds on 10th May to find out the way forward.
Taking all this in account, her learning difficulties, ataxia (issue with the brain not being in control of her limbs), sight loss and behavioural issues, she is the bravest little girl I have ever met. She makes people laugh everyday and doesn't grumble much about the cards she has been dealt. Please support our charity. Thanks for taking the time to visit my JustGiving page.