Mother to zip across Portman Road for son with autism and Dravet Syndrome
PUBLISHED: 07:30 30 May 2019
A Kesgrave mum will take to the skies at Ipswich Town Football Club to raise money for East Anglia’s Children’s Hospices (EACH).
Mum Mandy Dellar will take part in this year's zip slide at the football ground as a thank you to the hospice for the support they have given to her 15-year-old son, Daniel.
He suffers from a rare form of epilepsy, Dravet Syndrome, that can cause multiple seizures in a day. He also lives with autism.
Mrs Dellar explained: "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."
In a DIY SOS style project organsied by local charity GeeWizz, the family's home was transformed as more than 100 workers gave up time and materials to build a new bedroom and wet room for Daniel, that mum and dad - who have suffered five hernias between them carrying him upstairs - have labelled as "heaven".
It is the refurbishment that Mrs Dellar said gave her the confidence to sign up to take part in the zip slide and give something back to The Treehouse - the hospice's Ipswich base.
"Starting to use The Treehouse opened a new chapter in our life," she said. "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."
The fundraiser, sponsored by Bovis Homes, will see the people of Suffolk zip and slide across the Portman Road pitch from 10am Friday, May 29.
Those over the age of 12 interested in taking part can still do so by registering at the event on the day, costing £35.
If you value what this story gives you, please consider supporting the Ipswich Star. Click the link in the orange box above for details.