Meet Iwan
Wheelchair Powerpack
17-year-old Iwan Hughes has Dravet Syndrome, a rare neurological condition that causes frequent and prolonged seizures, and can lead to a range of associated challenges including intellectual disability, autism, ADHD, and difficulties with speech, mobility, eating, and sleep.
In Iwan’s case he also has ataxia, hypermobility and a distinct ‘Dravet Syndrome gait’, all of which affect his balance, mobility and coordination, and can result in unsteady movements.
Due to his condition, Iwan is unable to walk unaided after experiencing seizures and relies heavily on his wheelchair. Thanks to Chester-based charity Children Today Charitable Trust, the family has now received a powered add-on device – known as a wheelchair powerpack – that has dramatically improved Iwan’s quality of life and independence.
His mum Heather Hughes, explains:
“Iwan can have several seizures a week, which leave him absolutely exhausted afterwards. He’s not able to walk at all after having one, so his wheelchair is essential.”
Until recently, Iwan was still using an adapted buggy, but at 17 and nearly five foot ten, he’d completely outgrown it.
At almost 5 foot 10 Iwan had outgrown his old specialist buggy
Heather continues:
“Iwan has a new NHS wheelchair, which is brilliant, but it’s so heavy. Pushing it uphill or over rough ground was almost impossible. My back was in bits, and we were really limited in where we could go.
“We love the outdoors and regularly visit places like Chirk Castle, Erddig, and Bodnant Gardens, but there are lots of steep slopes. Since getting the powerpack, we can actually enjoy those visits again without the stress or strain. It really has transformed what we can do as a family.”
The powerpack is a small motorised unit that attaches to the rear of a manual wheelchair, allowing it to be powered via a simple push-button control. It helps carers and users to navigate inclines, uneven terrain, or longer distances with ease, without the need for a fully electric wheelchair.
Close up of the wheelchair powerpack – the equipment attaches to a manual wheelchair to motorise it
Heather adds:
“We’re also heading to a festival in Dorset later this year, and we have an annual trip to Center Parcs to meet up with other families affected by Dravet Syndrome. Before, we weren’t sure how we’d manage, but now we have the powerpack, we can go with confidence.
“We’re so grateful to Children Today. It might seem like a small piece of equipment, but it’s made a massive difference to our lives. It’s given Iwan greater freedom, and it’s taken a huge physical and emotional weight off our shoulders.”
Can you help us give more children like Iwan greater freedom and opportunities?
Your donation, whether small or large could make a BIG difference!
