Help for Kayleigh (Non Epileptic Attack Disorder )

I am setting up this fund page for my daughter Kayleigh, to raise funds and awareness for PNES /NEAD Psychogenic nonepileptic seizures/Non epileptic attack disorder. Unlike epilepsy there are not many available resources for help with this condition.

Kayleigh's Story

I started suffering seizures almost 2 years ago and at first they were, one seizure, sometimes weeks apart and I was diagnosed with Syncope.

At the beginning of the Pandemic last year and subsequent lock down in March my seizures spiked, sometimes having several a day with numerous hospital admissions, low oxygen levels (80%) and high heart rate happening mainly in my sleep. They have remained this way ever since.

I was referred back to neurology and was told it was focal epilepsy and put on anti-seizure meds, which didn't help the seizures and caused a burn-like rash which has left me with scars.

I was then diagnosed with NEAD non epileptic attack disorder, this disorder mimics epilepsy but can not be controlled by medication, it requires lots of therapy. I also suffer Todd's Paralysis sometimes after a seizure which mimics a stroke, so I lose all use of my left side and my speech goes, this can last upto 3 days.
I am at risk of Sudden death, injuries incurred during a seizure, I have fallen down stairs, scalded myself and in the pic above recently banged my head off the table.

It's like I am on a cycle, stress causes seizures,  seizures cause stress, and have had as many as 19 seizures in 2 days, resulting in numerous hospital visits, thats without other stressful situations in my life. All increasing my risk of serious injury or death if help is not arranged quickly. I have been referred for therapy 6 months ago but have been advised still a 12 month plus wait .

This fundraiser is for a bed seizure monitor, anti-suffocation pillows, a watch seizure monitor, various aids when I can't get about or speak, so people can be alerted that I am having a seizure more quickly and arrange help and to source private therapy to hopefully put an end to these episodes for good.

You could literally save my life.

Donations

 See top
  • Anonymous 
    • £5 
    • a month ago
  • Anonymous 
    • £8 
    • 2 months ago
  • Knox Debbi 
    • £20 
    • 2 months ago
  • Anonymous 
    • £50 
    • 2 months ago
  • Lyne Billington 
    • £10 
    • 2 months ago
See all

Organiser

Debbie O'connor 
Organiser
West Bromwich, West Midlands, United Kingdom
  • No.1 fundraising platform

    More people start fundraisers on GoFundMe than on any other platform. Learn more

  • GoFundMe Guarantee

    In the unlikely event that something isn’t right, we will work with you to determine if misuse has occurred. Learn more

  • Expert advice, 24/7

    Contact us with your questions and we’ll answer, day or night! Learn more