On Tuesday 23 October 2010 I’m shaving my head. Yes all my lovely hair is going! All money raised will be going to The Daisy Garland charity. A registered charity set up in the memory of Daisy Garland, who died in her sleep in April 2004 from SUDEP (sudden and unexpected death in epilepsy patients).
My beautiful daughter Blisse was born on the 23 October 2009. Unfortunately Blisse was born with a rare brain disorder (Periventricular Nodular Heterotopia - a bit of a mouth full I know).
Blisse suffers from severe epilepsy which is uncontrolled despite attempts with all available drugs. Monitoring these episodes has been very difficult as she doesn’t move or shake as some may expect with epilepsy, instead she goes stiff, stops breathing and then her limbs jerk - this is called a tonic colonic seizure.
To help us monitor these types of seizures at night we needed a SATs monitor, something the NHS will not fund. Our consultant contacted The Daisy Garland charity on our behalf who provided a SATs monitors for Blisse.
Blisse’s SATs monitor has picked up 15 night seizures so far without it I’m not sure she’d be here today.
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 taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
