Contributed by EACH (East Anglia Children's Hospice's)
10/05/2019 - EACH (East Anglia Children's Hospice's)
With over 100 people set to whizz across the pitch, the upcoming zip slide event at Ipswich Town’s Portman Road stadium promises to be a fun community day out.
Among those taking part in the event for East Anglia’s Children’s Hospices (EACH) will be Mandy Dellar, from Kesgrave, whose family receive support from the charity.
Mandy has three sons, Jack, Harry and 15-year-old Daniel, who has autism, global developmental delay and a rare form of epilepsy called Dravet syndrome, that means he has had multiple seizures every day since he was just a few months old.
Mandy explained: “When Daniel’s seizures started we had no idea what they were; they just kept getting longer and longer. He ended up in resus after a 45-minute seizure and I was absolutely frantic. They did several tests to rule out things such as meningitis, but the seizures continued. When Daniel came off a ventilator after three days in intensive care, he wasn’t breathing. That caused brain damage. His development stopped, which was heartbreaking. He used to say a few words, but now has no speech at all. The doctors said he’d never walk, but he proved them wrong and is mobile.
“Daniel requires 24-hour-a-day supervision. In 2007, he was diagnosed with Dravet syndrome. The risk of sudden unexpected death in epilepsy is 15 times higher than for those with other types of childhood-onset epilepsy, so it’s a daily worry. Every morning, if I don’t hear moving around, I panic he’s not OK.”
Last year, more than 100 workers from 40+ contractors gave up time and materials to design and build a new bedroom and wet room for Daniel.
Mandy and husband Nick have suffered five hernias between them carrying Daniel upstairs, so it came as little surprise to hear Mandy describing the new layout of their house as “Heaven”.
The changes have given Mandy the confidence to take part in the zip slide and give something back to The Treehouse, EACH’s hospice in Ipswich, that the family has received support from since 2011.
Mandy said: “Starting to use The Treehouse opened a new chapter in our life. Daniel enjoys going there for short breaks as well as specialist play therapy, and he has grown in confidence since attending. There are also social events, such as the Treefest music festival and Christmas parties. From my point of view, I’ve had counselling sessions that have helped me enormously. I’ve also made some great friends there. It’s so difficult to have a condition so few people understand. EACH do understand and it’s a great help to us all.”
Doing the zip slide at Portman Road is particularly emotive for Mandy as Daniel met some of the Town players, including club captain Luke Chambers, when they visited The Treehouse last Christmas.
The fundraiser, sponsored by Bovis Homes, will take place on Friday, 31 May and will see people zooming 440ft (130m) across the pitch, at a height of 100ft (31m), from the top tier of the Sir Alf Ramsey Stand to the bottom of the Sir Bobby Robson Stand.
Registration is £35 and EACH suggests participants raise £100 in sponsorship.
Those wishing to be part of the zip slide experience must be at least 12 years old. For more information about it and to buy tickets, visit www.each.org.uk
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