Mother whose family receive support from EACH to zip across Portman Road pitch

Mother whose family receive support from EACH to zip across Portman Road pitch

May 10, 2019

With over 100 people set to whizz across the pitch, the upcoming zip slide at Ipswich Town’s Portman Road stadium promises to be a fun community day out.

Among those taking part in the event for EACH will be Mandy Dellar, from Kesgrave.

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 explains: “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-odd 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, that the family has received support from since 2011.

Mandy says: “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.

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/zipslide.



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  • Renee loves going to The Treehouse, but it’s great that care staff are also able to visit us at home too. Stacy, Renee’s mum
  • It’s been a great opportunity to meet other parents in a similar situation, something that doesn't really happen anywhere else. Helen, William’s mum
  • EACH has helped us keep Stanley’s memory alive. And allows us to look to the future Brad, Stanley's Dad
  • The play specialists are excellent and I also get inspiration from the activities they organise. Heather, Lucy’s mum
  • When we first heard about the hospice we were apprehensive because we didn’t know what to expect. When we got there we realised it was a lovely place where Renee would be well looked after, and we would be able to have a much-needed break. Stacy, Renee’s mum
  • EACH supports families when they’re at their absolute lowest, helping them to come to terms with their child’s illness, losing them and beyond Brad, Stanley's Dad
  • I didn’t realise hope was a gift until I became a mum. My little boy taught me many things and that was one of them Claire, Jacob’s mum
  • We are also supported by the 24/7 True Colours nurses and it’s so reassuring knowing we can call on them whenever we need support or advice Helen, William’s mum
  • I really love going to the hospice. I’ve made friends there and get to do loads of fun stuff. Renee
  • EACH helps us to create lovely memories and has played an important part in all of our lives, not just Lucy’s. Heather, Lucy’s mum
  • EACH helped us with coping mechanisms and special ways of remembering Stanley. Brad, Stanley's Dad
  • I can’t imagine what it would have been like. Nobody should have to, every family should be offered the support we were, and are still getting Claire, Jacob’s mum
  • Children like Lucy don’t get the opportunity to go to sleepovers or to their friends for tea, so the interaction she has at the hospice is priceless. Heather, Lucy’s mum
  • We arrived at the hospice feeling scared and alone. We had so many questions – they answered them all and more. Claire, Jacob’s mum

The Treehouse

St. Augustine’s Gardens,
Ipswich, IP3 8NS

Milton

Church Lane, Milton,
Cambridge, CB24 6AB

Quidenham

Quidenham , Norwich,
Norfolk, NR16 2PH