Millie is just 9 and has been diagnosed with refractory epilepsy since only 4 months old.
At a young age of 2 Millie went threw brainsurgery to remove the frontol left lobe called a “lobectomy” to try and become seizure free but sadly this wasn’t a success.
throughout Millies 9 years of life it has been a constant struggle to live a normal life ... for her to be and do what every other child of her age would be doing .
Recently Millies health deteriorated to the extend she totally relies upon us to help with the simplest things in life like washing herself , eating dressing and now even to walk. These simple things in life a progressively being taken away from her.
Millie has been taking 100+ seizures per day which is so in human to watch knowing we can help her.
Millie has tried 27 anti convulsion medicines and diets to try and end her pain but only last month we were given the news that we are at the end of the road in terms of NHS medication.
We have only two choices left for Millie more brain surgery for a 50-50 chance of being seizure free which does comes a big sacrifice to her in terms of the potential to ever being able to walk again, tunnel vision, loosing the use of her right arm to even life threatening. Or 1 other medication privately funded and that comes in the way of Bedrolite.
Bedrolite has been legalised for use in the uk since 2018 though not 1 prescription has been issued in Scotland this medication can cost up to £1000+ each month and to this day is only accessed with a private prescription in Scotland.
We know this has been a really hard year for most people in terms of Covid, people loosing loved ones, jobs and families not being able to meet and of course other illnesses, If there are any people in a position that can help fund such prescription no matter how big or small we would be very grateful if you could add to the page.
Steve & Marelle
- Isabel Edwards
- Gayle Boyd
- Julie Gillan
- Alan Gilmour
- Audrey Scanlon
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