Olympic torch relay: Boy with epilepsy to carry flame
- 7 July 2012
- From the section Beds, Herts & Bucks
A Hertfordshire boy who has epilepsy with up to 50 seizures a day is to carry the Olympic torch during Sunday's leg of the relay.
Jack Gatehouse, 12, from Hemel Hempstead, also has Down's Syndrome and will carry the flame on the Hatfield leg of its 10-week trip around the UK.
After battling years of medical difficulties his family are pleased to have a happy event on which to focus.
"It's been a massive boost to us," said his father Pete Gatehouse.
"Life is difficult so it's nice to have something positive to look forward to and we have also met a lot of kind people along the way.
"Since it all started we've also realised that we can use the torch afterwards in our fundraising efforts."
A week after the relay, Jack's torch is set to be a big attraction at an event to raise money to for equipment that will improve his quality of life.
This includes a special wheelchair for a bike, funds to create a 'safe room' with padded walls and floor and a 'talk box' to help him communicate.
It is because of his speech problems that it is hard to tell how Jack is feeling about the part he is going to play in an historic event.
"We can't really gauge how excited he is, Jack has his own agenda, for him it's just another day, but the family are really excited," explained Mr Gatehouse.
Born in 1999, Jack underwent surgery within 18 hours of birth and was confirmed with Down's Syndrome shortly afterwards.
He spent the next three years going in and out of hospital with several respiratory conditions, was diagnosed with epilepsy aged four and was soon having up to 50 seizures a day.
"Jack's quality of life was slowly ebbing away, as the seizures got stronger," said Mr Gatehouse.
"He could be thrown across a room, or off a chair by a powerful seizure, which obviously, put his life at risk.
"Every day was spent picking him off the floor or tending to his bruises where he'd knocked himself about."
Aged 10, a medical team at Great Ormond Street Hospital suggested that brain surgery may help him, but his family then had to make a huge decision.
"We were told that he could die on the table," said Mr Gatehouse.
"It took us ages to decide whether to try to mend him or lose him but in the end we decided to go ahead."
In March 2011, Jack underwent six hours of brain surgery and returned home seizure free, but it did not last.
"For four months it worked and we were "up there", life was great, but then we came back down again, back to the depths of despair," explained his father.
"We were told that the surgery had an 80% success rate, but should it return it would be on a far lesser scale.
"Unfortunately, this wasn't the case for Jack, his seizures returned and they are just as punishing as before surgery."
Today, his seizures go in cycles, where he has a couple of weeks of up to 50 a day, sometimes for as long as 30 seconds each, then weeks of ten a day which is "as few as it ever is".
The seizures mean the day of the torch relay will present challenges, but his parents have been given permission by the relay organisers for him to have a chaperone.
His PE teacher Sally Lloyd, who nominated him, will run with him and Mr Gatehouse said he has no concerns.
"We're past worrying, it's part of our lives now," he said.
"If he has a seizure while running Sally will hold his hand, she will look after him.
"His seizures are like a light switch going off, it happens in a split second and his muscle control goes and he will fall, but holding his hand will go some way to stopping him.
"Generally though, he is on the way back up before he falls."
Jack's father said that his son "will love" the event.
"We will be able to see that," he said.
"He's a happy smiley little boy even after everything he has been through.
"He continues to bring sunshine into peoples lives with his wonderful personality and addictive smile, he is a cracking little lad."
The Voice for Jack event is on 15 July at Hemel Stags Rugby Club.