Hi everybody, this is something that is extremely hard for me to write.

I honestly don’t know where to begin.

On 7th December 2020 my daughter, Lola Alice, aged 4 years old, was fast asleep in bed when all of a sudden she started shaking and jerking, I had no clue what was happening. She then woke up, really upset about what had happened and her mouth and lips were full of blood. Naturally I rang the doctor and I was told she would need to have 2 seizures before they would refer her.

17th January 2021, Lola then had another seizure, again, in her sleep. I spoke to the doctor and he referred her to Bishop Hospital. I explained she as well as these seizures, she kept staring into space and couldn’t snap out of it by click of the fingers etc and he then organised an EEG at a later date. Basically it’s a lot of wires attached to her head and it sends signals to the brain to see if her brain shows any reaction to it.


Lola Alice was absolutely amazing, she sat the whole time, full of smiles, answering all the questions, doing everything she was asked to do. The gentleman actually said to her he wished everybody was as sweet as her and it made her day!

A few weeks ago I got the dreaded phone call, my heart sunk, there was a ball at the back of my throat I couldn’t explain. The doctor said “Lola’s results show she has epilepsy and I would like to start her on medication straight away”

She started them last week, starting with 3 tablets on a night for 2 weeks, then 6 tablets for 2 weeks then going up to 12 tablets daily! She is 4 years old, how is that even possible?

I had no words.

Lola Alice has been been taking them for over a week now, which, she has been fantastic taking them, I couldn’t be anymore proud of her! Only downside is, she has had another 2 big seizures in the space of a week.

I spoke to the Epilepsy Nurse who told me she will send me out some information. The nurse went on to say that because she has started having them during her sleep it is recommended for her to have an alarmed bed Matt which basically tells you when she’s having a seizure.

It was also recommended to get a sensor which she would wear on her wrist and it will sound an alarm when she’s having one.

It was also recommended for me to get a special pillow that will stop her from suffocating.

There were lots of other things that they recommended to keep her safe but my main focus at the moment are these three items.

The prices for these are through the roof, in the current situation I am in, I am unable to just go out and buy these at the drop of a hat.

I have rang numerous places to find out about funding, early years don’t have any funding for this type of thing and they only go up to age 3. I was then referred to Life Stages and Lola doesn’t meet there criteria.

I’m really struggling to come to terms with this, especially with her being so young andinnocent, I wish I could just take it away from her.

If you could spare any amount to help towards getting these things for her, I can’t tell you how much it would mean to me and Lola. We would be so grateful.

Thank you so much for taking the time to read this.