Category: Uncategorized Comments: 4 comments

Ten-year-old Sadie Fenton Hunt (1) has “West Syndrome,” a rare form of epilepsy that requires a special bed because she often bangs her head against the wall when she has a night seizure (ibid). The special bed was supplied to her by England’s National Health Service when the young girl and her mother were living in Northumberland, England. Because Sadie cannot speak or communicate effectively, that bed was considered a safety necessity in the Hunt household (2).

Earlier this year, Sadie and her mom, Effie, moved to Chesser, a town near Edinburgh, Scotland, to be closer to Effie’s mother. Edinburgh is only 78 miles from Northumberland (3) and is still covered by their NHS service. However, upon arriving in Scotland, Sadie and Effie were told that although a special chair and special bath would be provided but that their bed would no longer be covered by the NHS (2).

Effie is Sadie’s sole care giver. Obviously, she cannot stay awake 24-hours a day. But she also cannot take the risk of Sadie injuring herself at night. Her solution — the best thing she could think of to keep Sadie safe at night — was for Sadie to sleep in a dog kennel.

Children’s disability charity “Newlife” explained that there is currently a “postcode lottery” in the UK (2). What that means is that, at the Hunt’s old address, Sadie was a “winner.” She was “chosen” to get whatever help she needed. But that also means there are “losers” out there not getting the help they need. When Sadie and her mother moved, she went back into the lottery. Now she was a “loser,” unable to get the help that she still needs. That help, “her” help, was now going to someone else.

It was only after this story hit national papers that the city agreed to give Sadie the bed she needs. “We are going to provide the family with a new bed which will meet her current and future needs,” an official explained. “We would like to apologize to Sadie and her family for any upset caused. (4)”

But what about other kids with seizures just like Sadie? As Effie said, “I know there are lots of families in the same situation as we are. (ibid.)”

It’s easy to overlook people living with seizures. We do not seem like a very needy lot. Even a little girl, banging her head against a wall, is easy for city officials in places like Edinburgh to ignore. Until people speak up. Then they respond, sometimes with a surprising speed.

It’s nice to see people standing up for people who are falling down. I just wish it happened more often.

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  • Dilip  says:

    Now you can check simply distance between Chesser to Edinburgh at

    • Mark Hawkins  says:

      Thanks. That’s an odd website.

  • Emma  says:

    Thanks so much for this information. I have been dealing with Epilepsy on and off since October and I have visited several docs but they can’t tell me what is causing it. One of my friends told me about and PeaPlex is very helpful therefore.

    • Mark Hawkins  says:

      Thanks for your comment, Emma – and sorry you have joined our community. I hope it has not been too stressful (though knowing what I went through, I am sure it has not been easy.) I wish I could say, “well, they figured everything out very quickly with me. Hang in there.” They did not. It took almost a decade. Having said that: slowly triggers WERE identified. I learned that I needed to drink a lot of water. I learned that i needed eight hours of sleep. I learned that I needed to eat a better diet. Each trigger identified brought down my number of seizures.

      While I am still “uncontrolled,” slowly – over a few years – my number of seizures went from almost every day to a couple a year. Right now I have not had one for over a year. I can deal with the number I am having right now. It’s fine.

      Also, once you get over the initial shock and you stop living in fear, it is not nearly as limiting as it seems in the beginning. If you can get over the fact that you won’t really drive, the rest is very minor.

      I am extremely uniformed about the supplements you mentioned (just googled them) but we all walk our own road. I would think that as long as you are working with a good doctor, go with whatever is working for you.

      Good luck – and let me know how it goes!

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