Laila

Laila is 13 and was first diagnosed with epilepsy four years ago. Her mum Saima tells her story.

“Laila kept having what I thought were daydreams. The doctor looked over at her and whispered to me ‘I know we’ve not got a diagnosis yet, but I can clearly tell that your daughter’s got epilepsy.’ My heart sunk – that word just seemed so scary.”

Shortly after Laila’s 11th birthday, she had her first tonic-clonic seizure.  

“As a mother, seeing that, it was like someone had just pulled my heart out. I was just shouting her name, begging the paramedics to help her. I had so many questions. Had I done something wrong as a parent?

“Laila was diagnosed with a juvenile epilepsy syndrome. She is now 13 and quite a happy girl. She’s always been positive and upbeat. She has two younger sisters and is very caring with them. She is just a really good girl and she does well at school too.

“But that’s Laila on a very good day. The side-effects from her medication (levetiracetam) can affect mood. She becomes very quiet and depressed, crying a lot, and very angry. It really feels like a family battle, dealing with this condition, not just the one person. It’s that constant fear.  My daughter is a teenager now and growing up. I want to give her that freedom, but it’s really hard. She asks me things like ‘When am I allowed to lock the bathroom door?’

“Even just going out for a family activity, you have to check every little thing. It’s such a restriction on life. Until you’re walking in those shoes, you can’t understand. It’s like a black cloud over my head, that never goes away.

“But I always tell Laila that she should be proud because her brain is so amazing, even doctors can’t work it out. She loves reading, her bedroom is like a library. She likes writing as well. I bought her a few diaries and I told her to write things down – positive and negative – so she can look back and see how far she’s come. She loves drawing, singing and dancing, so that’s something epilepsy hasn’t taken away from her.

“As for me, I have good days and bad days. I try to look for the positives where I can. But some days I’ll just have a good cry in the car. You need to be good to yourself as well. It’s important, because if you’re stressed, your child can sense it.

“I think when Laila grows up and will want to spread her wings and go. That scares the life out of me. But epilepsy shouldn’t have a hold of your life, you should still try to do all the things you want to do. I look at Laila and all three of my girls and I think life is a lottery. Some people have money in their lottery, but I’ve got my three daughters and there’s no bigger prize than that. Whatever challenges I get, I’m ready.”

Laila
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