Real Life Video: My son wears a helmet to protect his head

Dec 5 2011 by Zoe Chamberlain, Sunday Mercury

Little Tom Morley, six, has to wear a padded helmet after suffering up to forty five epileptic seizures a day. But dad Andy, 30, and from Ilkeston, Derbyshire, tells Zoe Chamberlain that a breakthrough could have arrived....

WE FIRST noticed a problem when Tom was just eight-months-old.

He was lying in bed with me and his mum, Holly, when he made a terrible croaking noise.

His whole body went rigid, then he curled up into a little ball. His eyes rolled back and his mouth was wide open.

He then started to turn blue, as he couldn’t breathe.

It was terrifying.

>>> Read more on Thomas and Andy's blog<<<  

Holly started screaming and then called an ambulance. But, by the time the paramedics arrived, it was over.

At hospital the doctors thought it was just a bug that had caused a febrile seizure, which can be quite common in babies.

But they warned that if it happened again, we would have to have further tests.

My grandad suffered from epilepsy, as did Holly’s cousins. So when it did happen again two months later, we had a good idea what the doctors were going to say.

When they confirmed that Tom had epilepsy we expected the worse.

Yet we weren’t given much information so we Googled ‘epilepsy’ and found good advice from the Epilepsy Action and Young Epilepsy groups.

But Tom’s seizures continued and began increasing. They started coming every three to four months, each one the same as the first. Then as soon as he started nursery and his brain became more active, he began to have five or six a week.

By the time he was two-and-a-half, he was having up to 45 seizures a day.

The type of seizure he had often changed too.

He has had myoclonic seizures, where part of his body jerks; absence seizures, where he stares into space; and tonic-clonic seizures, which is what we describe as the ‘big shaky’ ones.

But, most commonly, Tom suffers atonic seizures, where he just falls to the ground because every muscle in his body relaxes.

This can cause nasty injuries which are heartbreaking to deal with.

The worst was when Tom split his chin on stone steps when he was four. He had to go to hospital to have it put together again. He has a massive scar there now.

Tom has also suffered other injuries, including countless bruises and black eyes.

When he comes out of the fits, Tom starts crying and we just have to pick him up, give him a cuddle and treat any wounds.

It was so difficult to deal with because we couldn’t leave him on his own at all.