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Fife mum fights for epilepsy support group

Mum launches fundraising campaign after nine-month-old daughter suffers seizures.

25 January 2010 16:02 GMT

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The mother of a baby girl in Fife diagnosed with epilepsy is fighting to set up a support group for families in a similar situation.

Little Gracie-May Smith started having seizures at just six months old and since then, her mum Loreen has been trying to find out everything she can about how to help her daughter.

However, Ms Smith quickly found there were no support groups in the Kingdom to help parents like her.

Fife mum fights for epilepsy support group

Now, the 23-year-old from Inverkeithing has set up an appeal in nine-month-old Gracie's name, in a bid to raise both awareness and cash.

Ms Smith told STV News: "I've found, since her being diagnosed, there's lots of information but you have to know where to look to find it.

"There's not a lot of awareness centrally and there are no support groups at all in Fife that you can go to to chat to other mums that are going through it so I've felt a bit isolated."

Ms Smith has now set up a Facebook page and is working with charities Quarriers and Epilepsy Scotland to raise funds to support sufferers across Fife.

She said: "The problem is that there isn't an active support group in Fife that parents, families and children, even adults, can go along to to counsel each other and support each other.

"So what I plan to do is raise enough money and enough awareness to get somewhere in a community hall on an evening or a weekend where we can all get together, go through it together and support each other through it. Because I find it helps to talk about things.

"As a parent, seeing your child having a seizure is not the nicest thing at all. I went through these emotions of 'Is it something I'm doing wrong?' or 'Is there anything more I could be doing?'. And obviously, there's not. It happens and there's nothing I can do to prevent it.

"To be able to sit and talk to someone who has already been through it and had that train of thought would just make it easier to deal with."

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  1. Default avatar

    1. 27 Jan 2010 11:52Hattie said

    could some one give me the link for the facebook group that graci-may's mum has opened, i have tried the search and nothing is showing up, would be very grateful, thanks

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    2. 24 Mar 2011 00:12Julie and Laurens Konings said

    Hi Loreen and Gracie, We are from Australia and we read your article and remember seeing a movie which is a true story...called "First Do No Harm". This is about a young boy who was having up to 90 seizures a day and is now completely cured...Meryl Streep plays the role of the mother, we hope this could help you and Gracie....kind regards Julie and Laurens.

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