‘Life can be difficult with a two-year-old who has epilepsy’

Crystal and her husband Wayne with their children (l-r) Lacie-Louise (4), Bradley (nine months), Rory (2) and Harvey (6).  Picture: Sarah Standing (170509-232)
Crystal and her husband Wayne with their children (l-r) Lacie-Louise (4), Bradley (nine months), Rory (2) and Harvey (6). Picture: Sarah Standing (170509-232)

9 lifestyle changes could reduce your chances of getting dementia

0
Have your say

Walking into the Cannings’ family home, you hear the delightful sound of happy children laughing.

But for the family of six, it’s not always this way.

That’s because two-year-old Rory suffers from epilepsy.

He regularly has seizures, sometimes as many as several times a month.

But his parents Wayne and Crystal, from Baffins, Portsmouth, have had to learn to deal with his condition and know how to act and what to do for him when he does suffer a seizure.

But what is it like for a family bringing up a youngster who suffers from epilepsy and how does it affect their lives on a daily basis?

Rory, who has three siblings – Harvey, six, Lacie-Louise, four, and Bradley, nine months – was first diagnosed back in August, 2015 when he was just over a year old.

Wayne says: ‘When Rory was born he wasn’t breathing. But the doctors managed to bring him round and he was okay.’

But when he was around eight months, Crystal and Wayne knew something was wrong.

Crystal says: ‘I took him to the hospital and they said there’s nothing to worry about. But literally two weeks later I was in bed and he was making weird noises.

‘I realised he was having a seizure. I just panicked, I was in hysterics.

‘I called Wayne who was at work and then I called an ambulance. They took him straight to QA. He was having a seizure for about two hours. They were about to sedate him and then he came round.’

Rory had tests done and eventually was diagnosed with a form of the illness known as focal epilepsy.

Crystal says getting the diagnosis was a relief.

‘Before, we were all over the place,’ she says.

‘We didn’t know if it was epilepsy or if there was an underlying problem. At the end it was relief for us because we knew he could start treatment.’

Rory is on regular medication to help reduce the chances that he will have a seizure.

After one he is often not able to walk. He can’t sit unaided and has to lie down.

Wayne adds: ‘He’s very sleepy afterwards. There’s no response from him to a certain degree. He’s very lethargic. He cries and he’s not himself for a good couple of hours. Sometimes that can last for days.

‘For Crystal, it sends her into a major panic. I try to keep a level head. I send her off to pack some clothes for the hospital.

‘But deep down, I am very shocked and worried because you don’t know what the seizure is going to turn into. There was a time that he stopped breathing.’

On that occasion, Crystal’s mum managed to get him breathing again while Wayne called for an ambulance and Crystal organised a bag for the hospital.

‘He’s had so many hospital trips, it’s hard to keep count,’ Wayne adds.

‘It’s hectic. What’s hard is that if he is having a seizure we have to call an ambulance and then we have to get family to look after the other children so we can go to the hospital with him.’

Wayne and Crystal have been given instructions on what to do each time Rory has a seizure. They have to check the time straight away to see how long it lasts for, as well as filming it to show the medical staff.

If he doesn’t stop within five minutes they have to administer a syringe of medication which is meant to relax the muscles in the body and stop the seizure.

Then they have to take him to hospital as they are not authorised to give him any more medication.

More recently, Crystal has been diagnosed with epilepsy herself and Lacie-Louise has also had seizures, but is yet to be diagnosed with the condition.

Wayne adds: ‘When Crystal started having seizures, my brain kicked in and I knew what to do.

‘I do get scared. At first it was very scary because we didn’t know what was going on, but now it’s a bit more manageable.’

Rory has regular tests to monitor his condition.

Wayne says: ‘It’s difficult because a lot of the time he can’t tell us if he’s going into a seizure.’

‘You can tell with an adult, but with a child so young it’s quite difficult. He doesn’t like to be confined to small spaces and he gets aggravated in noisy places.

‘Often he has to be in a buggy because he can’t or doesn’t want to walk.

‘Life in general is rather difficult.’

FAMILY HAVE BEEN WORKING WITH CHARITY

The Cannings family have really done their bit to raise awareness of epilepsy.

They have been working with the charity Young Epilepsy and have set up a Facebook group in Portsmouth and organised fundraising events.

Last October, Wayne did the Great South Run to raise money for the charity.

Earlier this year, the family helped to get the Emirates Spinnaker Tower lit up purple to mark Epilepsy Awareness Day, better known as Purple Day.

They were joined on the tower’s viewing platform by Lord Mayor of Portsmouth, Councillor David Fuller, and the Lady Mayoress, Leza Tremorin.

Wayne adds: ‘We are trying to get the awareness out there.

‘A lot of people aren’t aware of epilepsy.

‘People think it’s just a general thing where people fall to the floor and their body shakes, but it could be a number of different things.’

There are roughly 112,000 young people in the UK that have epilepsy.

Carol Hunt, Young Epilepsy regional fundraiser for Hampshire, says: ‘It is so important that more people get to understand the day-to-day difficulties of epilepsy.’

Visit Young Epilepsy Portsmouth on Facebook.

To find out more about the charity, please visit youngepilepsy.org.uk