Everyone with epilepsy has their own story. This is Montana’s story, written by me –Tania-her mother. It is a testament to the unyielding love and the unswerving support parents give to their little ones, on a daily basis.

Our darling little girl Montana was born in February 2003. She filled our home with joy and love that was different from anything my husband and I had ever experienced. Montana was born perfectly healthy, and continued this way until she was ten months old. She was already trying to talk and she was almost walking. This is when she experienced what we thought were ‘teething’ problems. She seemed unusually quiet, but her elevated temperature seemed like one of the expected side effects of yet another developmental milestone.

However I tried to give her some medication to ease her now very high temperature. This proved impossible. When I put her down onto the floor, she sat cross-legged with her head locked over her right shoulder. I immediately knew something was terribly wrong. After a frantic rush to our local hospital my baby was diagnosed with meningitis (herpes encephalitis) Then our nightmare began.

We were sent to the Mater Private Children’s Hospital, and after one week, Montana began to seizure. She was put on anticonvulsants and then oral liquid to come home. After returning home we didn’t observe any obvious seizures. So, under doctor’s supervision we began to take her off the medication. By February we thought she had come through the whole process with only a slight delay in her development. What we didn’t realise was that she WAS having seizures but we just didn’t recognise them. In April our neurologist ordered an MRI and an EEG.

It was then confirmed that nearly a quarter of the right side of our sweet little girl’s brain had been damaged by the encephalitis, and that she had chronic epilepsy.

We then began the arduous drug trials to try to find a drug that would control Montana’s epilepsy. There were months that year that were so bad that I was not sure how we were going to survive. We then discovered that Montana fell into the category of those with epilepsy who could not be controlled by medication. Scans revealed Montana was having constant seizures, and my happy little girl became withdrawn and sometimes had extreme behaviour. Often she would scream for hours. We were devastated! I was not sure how long I could go on living with this. I just wanted to know when it would end.

Montana was having up to sixty seizures a day, including absence seizures and drop seizures where she would fall flat on her face. On one of these occasions she knocked out her two front teeth. She also had voice activated seizures where at one stage you couldn’t say her name, or make a sudden noise without triggering a seizure.

In search of something- anything that would help our little girl we heard of a place in USA that gave us hope. I traveled there and learnt much over five days about brain injured children.

By this time my little one was experiencing seizures everyday. She was on high doses of medication to try and control them, however nothing improved. She even had seizures while she was asleep. In January we started to do the program that helped with her brain injury, but she continued having constant seizures.

In desperation the following March, we began a six weeks of steroidal injections. There were a lot of bad moments in that six weeks as the side effects of the steroids can be devastating, and this was followed by extreme tiredness.

Montana has now been off the steroids for a short time and so far, we have had success. She is still having peaks/seizures in her brain, but we haven’t seen any physical signs of seizures. We are aware that there is no guarantee and the seizures could come back at any time, but we thank God very much that she is as good as she is at the moment. She has begun to interact with us again. She’s even begun smiling and playing.

There is a lack of public awareness and understanding which makes living with a child with epilepsy and brain damage difficult. A lot of people do not understand it. I find I have to constantly justify Montana, for being how she is. Epilepsy is not like a broken arm, and gone in six weeks. Epilepsy Queensland’s Annual awareness campaign goes a long way to helping the community to understand epilepsy, and also supports and gives hope to those of us who live with it.

* Update: Montana is now five. Her seizures are much better controlled than when this story was written. We have tried a number of alternative therapies, with varying results. Her sister Rachel is sixteen months older than Montana, and is very good, very protective, especially when other kids tease or make fun of Montana.