OUR STORIES

Ella was born on the 3rd of April 2005. She was my first child, a happy healthy beautiful girl with a gorgeous nature and a little bit of strong willed in there already as a baby.

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At 10 1/2 months old Ella was in her high chair and I was feeding her some dinner when she had a small seizure. Unfortunately I have witnessed seizures before and knew what it was. I was still in shock though and even though it was not a large seizure, I took her to the Emergency Department at the Children’s hospital to have her checked out, which entailed monitoring her. She seemed fine, so I took her back home.

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That night I woke up to hearing the worst gurgling noise coming from Ella’s baby monitor in her room. I raced in there to be confronted by a horrible seizure: she was shaking, convulsing, and going blue. I called an ambulance and back to the Children’s Hospital we went. She had quite a few of these horrid seizures over the next 12 hours, but what put my mind at ease was that the neurologist thought she may be having febrile convulsions, so I was hopeful that this was all. Ella has other family members in the family who have epilepsy, so the neurologist did put her on an anti-convulsant and sent us home.

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For the next few weeks things weren’t too bad, I was optimistic that Ella would be alright and this seizure fright was a one off. Unfortunately that was not the case. About four weeks later these horrid big seizures started back up,only this time they were clustering and she was doing a lot worse. This time the hospital stay became pretty close to three and a half weeks, where she was seizing so many times I really thought I was going to lose her. My life turned up side down. When your baby, whom you love to bits is fighting for her life, you feel so helpless and wish you could do something, anything, to help bring her back from this nightmare. Drugs upon drugs were tried to try and stop the cluster.I was around 3 months pregnant with my son at this time and it should have been a happy time for our family, instead it was one of the worst times of my life. When Ella did come home from these seizures, she had started to regress. She was so drugged up. People used to say to me she looked tired. With that seizure cluster she also completely lost her hearing and I was worried about her not being able to get it back, but thankfully this only lasted about six weeks and she could hear again.

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Today, Ella is a happy eight year old. She does have an intellectual impairment and Autism Spectrum Disorder, is quite oppositional and defiant but she is Ella and so unique in many ways. Through it all, she gives our family much joy. She attends a special school which she loves. Her favourite things are drawing and cutting and glueing with paper.  She often plays schools with her favourite toys and pretends she is the teacher. Over the years we have had many seizure clusters and many hospital admissions. She sometimes regresses when these clusters are over and it  can take her months to recover from them. It can also mess up her behaviour as well which can be challenging at times. My hope for Ella is that one day we will find a cure for this PCDH19 Female Epilepsy and that all the girls won’t have to endure any  more terrifying seizures again.

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Kristine, Mum.