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for various al with Clare my husband to give me a hat could be ome and all as I had no od. In the ert to get a e my stress.” as changed e there for n’t do fullClare goes. When she was younger, and on lots of different tablets, she would have all sorts of reactions.
“No one understood their effect and I felt people just thought I was defending her for nothing at times.
“As Clare got older, her epilepsy has got worse and she became more aware of how it restricted her.
“Her father changed jobs to be home all the time and her sister chose a university close to home for the same reasons.
“We all thought of what Clare was doing before planning our day.”
Clare’s education has suffered. She missed a lot of school due to the seizures and in the end refused to go because she had missed so much.
She went to college for a year but found some tutors far from understanding about her condition and the absences it forced her to take from class.
Clare did get support from the student support base at college and was able to go on a placement two days a week to a nursery.
She made up for days she missed because of her seizures by going in on holidays.
Jane said: “That wasn’t a great success as people thought she was lazy and not really understanding that she was tired due to seizures and did need a little more help than some of the other students.”
Clare was so determined to fight back against epilepsy that she has just had a nine-hour operation to remove the part of her brain causing the condition.
Jane said: “Her recovery has gone very well so far but we have a long way to go.
“She will stay on her tablets for a year and if all goes well they will take her off them and if there are no seizures for another year, Clare will get her life back.
“It was a big risk having the surgery as they hadn’t done it before but Clare has wanted it since they said there was a chance at 14.”
Clare has an epilepsy alarm. Jane said: “It is a lifesaver. I can go to bed knowing that if she has a seizure it will alert me or anyone in the house.
“It is so easy to use and you can take it around house with you when Clare is asleep. We received ours free from the Muir Maxwell Trust.
“To our family it is a life-saving piece of equipment. If we didn’t have an alarm Clare would most certainly be in my room sleeping and that is not appropriate for a 19-year-old”.
Jane wants young people to learn more about the epilepsy at school.
She said: “The older generation seem to still think people who have seizures are some sort of weird person who you don’t have anything to do with.”
The Muir Maxwell Trust are raising £250,000 to continue to provide practical support and free epilepsy alarms to families throughout the UK.
Each alarm costs them £500 to supply free to a family in need.
You can support the Trust’s latest fundraising challenge by visiting www.charitycupcakechallenge.com
The campaign #beatepilepsy was launched in Edinburgh last month by the trust’s Ann Maxwell and star supporter Christopher Biggins.