On Air Now
Early Breakfast with Jenni Falconer 4am - 6:30am
19 June 2012, 12:37 | Updated: 19 June 2012, 13:04
The parents of an Olympic Torchbearer from Hemel Hempstead who has Down's Syndrome and severe epilepsy are trying to raise thousands of pounds to buy equipment to improve his life.
12 year old Jack Gatehouse has problems with his speech and his parents want to buy him a talkbox to help him communicate. Also on the wishlist is a wheelchair that fixes onto a bike so he can enjoy family bike-rides for the first time. His parents also need enough money to create a 'safe-room' - somewhere Jack can go that is safe for him to play in with padded walls and floor.
Jack will be carrying the Olympic Torch through Hatfield on 8th July and on 15th July his parents are holding a fundraising auction called 'Voice For Jack' at Camelot rugby club in Hemel Hempstead. They already have some fantastic prizes including tickets to Shrek The Musical, a golf day at Shendish Manor and an Arsenal Football Club shirt - not to mention a celebrity appearance from Stavros Flatly of Britains Got Talent fame!
Jack's dad Pete told Heart in his own words why his son deserves all the help he can get....
''Jack was born at Hemel Hempstead hospital on 5th Aug 1999 and was undergoing surgery on his bottom within 18 hours of birth. He was confirmed with Downs syndrome shortly after. Jack went into heart failure at 6 weeks and had 'life saving' heart surgery (AVSD, two holes in his heart repaired) at 7 weeks. The following 2/3 years, Jack was 'in & out' of hospital with several respiratory conditions and spent several periods on a ventilator. At 4/5 years, Jack was diagnosed with epilepsy. Within a year, this condition became 'severe' and Jack was having up to 50 seizures a day! He was also, by now, starting to suffer with 'chronic constipation' which is still ongoing today! The next 4/5 years, Jacks quality of life was slowly ebbing away, as the seizures got stronger. Jack could be thrown across a room, or off a chair by a powerful seizure, which obviously, put his life at risk. Unfortunately, during this time, Jack lost 3 of his 4 'best pals', his grandparents, which put extra strain on him, as he didn't understand where or why they had gone. Jack still looks for them today. At the tender age of 10, Jacks epilepsy had completely taken over his life. Every day was spent picking him off the floor or tending to his bruises where he'd 'knocked' himself about. The medical team at G.O.S.H. suggested that brain surgery may help Jack, and tests were started to see if Jack was a 'suitable' candidate - he was. In March of 2011, after a year of heart-aching and tears for all of us, Jack underwent 6 hours of brain surgery in which damaged tissue was removed and the epileptic side was 'disconnected' from the rest of his brain. Jack spent the next few weeks recovering in hospital and then 'going on' to the Children's trust at Tadworth, where he made remarkable progress. jack returned home 'seizure free' where he continued to recover and he enjoyed life without epilepsy for 4 1/2 months. We were told by his medical team that the surgery had an 80% success rate, and that should it return it would be on a "far lesser scale" than he'd previously had to endure! Unfortunately, this wasn't the case for Jack, and his seizures returned and they are just as punishing today, as they were before surgery. Today, sadly, Jack is further back than where he was prior to brain surgery. We were told beforehand that should Jack have the surgery, it was 'very' likely that he would lose some sight in his right side 'field vision', which he has, and is now registered as 'partially sighted'. He has also lost the use of his right hand, which was always quite weak, but now cannot be used at all! Just recently, we were told on a visit to see Jacks neuro surgeon, that Jack will never be cured of this terrible condition and he will have to carry it through life with him
Despite all of this, Jack is a happy child, and he continues to bring 'sunshine' into peoples lives with his wonderful personality, charm and addictive smile....he is 'a very special person'
Further details of fundraising events can be found on the 'Voice For Jack' Facebook page - click here