Better futures for young lives with epilepsy and associated conditions

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Monty's story

Epilepsy is the kind of condition you read about and think will never affect your children yet one winter’s morning in 2008, I witnessed by eldest son, Monty, have a full-blown seizure, his eyes rolling back and his arms and legs waving repeatedly in the air. Monty was just 13 months old at the time and his younger brother, Archie, was a newborn. We hadn’t expected to have a second child so quickly but when we discovered that I was once again expecting, we decided that it was probably for the best. I had quit my full-time job at a busy lifestyle magazine and was writing freelance. I planned to work from home until Monty was at least three; the arrival of Archie made life hectic, but it also meant that I would be able to return to full-time work by the time he was three and Monty was four. I liked the freedom of working from home, yet I missed my work buddies and the office ambiance, and I wanted the chance to prove my worth at the magazine.

When Monty had his seizure, all my plans were placed on the backburner. My world fell apart when they told me he had a very rare type of epilepsy and the two medications normally prescribed for his disease, had serious side-effects. As the months went by, Monty had seizure clusters which lasted between five to 15 minutes and which occurred several times a day. I felt a mixture of impotence, anger and frustration; why wasn’t the medication stopping these seizures and what would happen to Monty when he grew older and we were no longer there to watch over him and keep him safe during seizures?

We tried several medications; the doctors warned us that some of them could cause heart problems or blindness. We met Monty’s doctor, Laura, when he was one and a half and she made a huge difference to our lives. For one, she recommended a medication that stopped the seizures but did not cause other illnesses. Monty does have developmental delays (which Laura tells us is to be expected) but he is improving in leaps and bounds.

Monty is now seven and Archie is six; we have made a decision to homeschool them for now, since Monty has special needs we feel we can best attend to at home. I have learned so much about the importance of making learning fun, especially in his case, since he can get distracted and a bit disappointed when he finds tasks like identifying letters or forming words, difficult. Archie is a big help; he is naturally bright and already reads basic words and simple sentences. Sometimes, he will sit next to Monty and point to a word and say it, and when they are together, Monty seems to take a greater interest in books, pictures and numbers.

I haven't managed to make it back to work yet, but I am one of the lucky ones; we can afford to survive on just one income. I take solace in the fact that I can work freelance, selling articles to my former employers, who always showed their loyalty and support. I must say that I don’t feel frustrated; I am simply grateful that our family has managed to make it through such a challenging process.

Just seeing Monty happy and seizure-free was our major goal and we have achieved it. With hard work, discipline and determination, Monty will eventually hit his milestones and perhaps even be able to attend traditional schooling at some point. At the moment, though, I am starting to see great value in homeschooling: the idea that we can learn anywhere (in a park, at a museum, in an art gallery) makes the process much more fun, and I feel that I am able to personalize the learning experience for each of my children.

Epilepsy and seizures are an awful experience no family should have to go through but living through it is simply a matter of searching until you find the best doctor and medication for your child. I have high hopes for Monty and I know that epilepsy will not stop our family from enjoying a full and happy life.

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Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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