Personal Stories: Freya - Sunshine and Miracle

Freya Booker born 21st of May 2011, and is our little Sunshine and Miracle. Freya was born premature (8.2 weeks) and had surgery on the brain the day after. She has an undiagnosed brain disease with her corpus callosum which has caused her epilepsy.

Freya started cramping at eight months old, which to us looked very strange and odd looking. She cramped about six times after that, within an hour. We took her to the hospital and later found out that she has epilepsy. In the beginning it was really hard for us because the cramping didn't really stop until the doctors got the dosage right for the medicine she was taking. We give Freya lots of medicine twice daily (keppra and ergenyl), we have to use a syringe because she can't take it herself.

Every now and then we have to use diazepam to help her relax if her cramping has gone on too long. i.e. 6 cramps with time outs of about 2 minutes. This is the same cramp but just having breaks. The medicine is used and squirted up her bum. Freya sleeps for about three hours after this, and is very perky afterwards, with the epilepsy under control.

Freya seems to cramp when she is tired, has the flu, and when she puts on weight. We also have it very hard going because she can't communicate with us on how she is feeling, because of her illness.

Freya is a very happy child and has difficulties in all areas, but we have great experience in epilepsy.

Freya has check ups every six months and receives EEG's to keep an eye on her epilepsy.

This is a first for me explaining my daughters epilepsy and very hard to write. I hope you understand what I've written, because this is a hard job to keep going mentally for the love of my life. Freya is a champ in so many ways and brings the best out of me.


Personal Stories: Martin

What it's like living with epilepsy is very hard. At first I didn't understand what my fiancé was going through.

When my son was 1 month old, we were sitting on the bed. She had Rauji our 1 month old son, and she started convulsing while we were in a conversation. Very scary.

What is like living with her? It is very delicate relationship, if she gets stressed out, or over excited, she can have a seizure. Because of her epilepsy, her memory is very scattered. Even of everyday things. One time she put away my clean clothes after laundry and we can't find them. It took a great deal of searching. At first I thought to myself "Man this girl is nuts!" but after reading and research I realized it's her epilepsy, that made me feel sad. I had to change the way I interact with my fiancé.

Everyday I worry she is having a seizure. I call her from work , on the road or wherever I go.

I think the worst epilepsy attack Niki had was June of this year. She could not walk, her speech became jibberish. I had to take care of her and Rouji. She had 3 seizures. I was so scared. I thought she would not be able to speak or walk again.

I struggle with what is going to happen to my son. he is only 1 years old. if Niki were to die , or never come out of her seizure / stroke symptoms. Should I run, should I stay? I choose to stay and fight for epilepsy sufferers.

I had dig deep in my head mind and body, about this sickness, I want to fix that. With

I am dumbfounded that on this planet in this "modern day and time" we can't find a cure for epilepsy. It just doesn't make sense. What is the difference between this time era, and Christopher Columbus time era? None A BIG FAT NONE. WE ARE STILL OLD AND JURASSIC. REALLY WEIRD TIME WE ARE LIVING.

Personal Stories: Jennifer

My name is Jennifer Lindley.

When I was 10 moths old I got meningitis. It was by luck that the doctor that I had knew what he was looking at, because he had lost someone else to it. As I was living in the south west of western Australia. They had to race me up to PMH.

I was very sick for 2 weeks. It was at the end of the two weeks that I had a seizure, but I had nothing else until I was 2 year's old.

The doctors had me on different pills until I was 10.

When I was ten years old (1984) I was put into Tegretol, and was on until 2011 but I had been tired on Epilm.

My mum knew about an operation to control the seizures, but as I was still very young and my Brain was still growing, mum did not want to touch it in case something went wrong. She decided to wait until I was 21 to let me know, and then I could make the decision for myself.

By this time I was getting married and settling in to a job, so I decided to have a look into the operation and find out my options. As it turned out, I had a scar on my brain about the size of a grain of rice. They had to get me in for a week to find where it was coming from.

It took them four times of testing to pin point exactly where it was coming from. In February the next year they did the operation of L anterior temporal- lodectomy.

At the end of the year I asked my doctor if I could think about having kids. I had my first child 9 months later and then my second one just under 2 years later.

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