Lou shares how being part of Epilepsy Scotland’s Youth Group has helped her daughter Millie and the importance of the adventure weekend to her family.
How did you feel when your daughter was diagnosed with epilepsy?
Concerned and sad, but also hopeful that there would be the ability to manage the condition, or stop the seizures completely not that they had a diagnosis. Unfortunately, we haven’t been that lucky.
What type of seizures do they have? How does it affect them?
The prolonged absence seizures mean that she is normally left with a very sore head for hours afterwards.
Both types can mean that Millie may fall to the ground which can lead to further injuries depending on where she is when it takes place.
It has taken away her confidence, removed her trust in both people and situations and left her isolated.
What challenges has your daughter faced since being diagnosed with epilepsy?
It has meant a lack of independence for her as she has grown up as there are many more factors that need to be taken into account when she is going about her daily life.
She is bullied at school and finds the whole environment very stressful.
The number of seizures also leads to her missing days at school which affect her education and her memory is seriously affected by her epilepsy.
She struggles to make friends and have a secure support group round her.
How has being part of Epilepsy Scotland Youth Group’s helped your daughter?
It’s been life changing. It is the only place where the ‘Millie’ we get at home is seen in the outside world.
In every situation Millie will walk in with her head down, does not make eye contact and will not engage with people.
In Epilepsy Scotland it is a completely different story, she looks forward to going, she walks in with her head held high and has confidence with the group that are there. It is the only place she is herself and feels safe.
What changes have you noticed since your daughter joined the Youth Group?
She is far more confident and willing to talk about her epilepsy. She is aware that it is not something that she can control, but also not something she needs to apologise for.
It has allowed her to form good friendships in the group, it gives her the opportunity to get out in social situations and also not to worry about what will happen if she has a seizure.
How important was it for you to have time over the weekend whilst your child was on the adventure weekend?
It’s the first time she has been away from home where I haven’t had to watch my phone or constantly been ‘on call’.
I knew that if she had a seizure that she has the best people around her to deal with it. It was so important for us to see her have that independence and to have her away, but knowing she was safe.
What did you do with your time whilst your child was away with the group?
Shopped, relaxed, went out for dinner and saw friends, it was an amazing weekend!
What has been the biggest difference that Epilepsy Scotland’s Youth Group has made to you or your family?
It has given Millie a safe place, friends that she feels comfortable with and a place where she looks forward to being.
The difference it makes to me as a parent to see Millie happy and in a safe place is not even measurable, she finds school and social situations very difficult to deal with, but not at the Youth Group, she gets to be herself and is welcomed and included. All Millie wants is to be included.
What does Epilepsy Scotland mean to you as a parent or carer?
Everything! It allows Millie to be a normal teenager, as a parent you cant ask for anything more than that.
What would you say to someone thinking about donating to the Crowdfunder for the youth group adventure weekend?
Please do it, with the knowledge that you are helping to give children and young people the ability to enjoy independence and activities that most children take for granted.
You are allowing parents and carers to breathe for a weekend and relax in the knowledge that their kids are living their best life! For the whole family it delivers a weekend of freedom.
This Christmas, we are launching a CrowdFunder appeal to raise money for an adventure weekend for young people living with epilepsy next year! To donate, please click here