How a tiny device gave Buckley teen new freedom
A powered wheelchair add-on has dramatically improved life for 17-year-old Iwan Hughes from Buckley, who has the rare neurological condition Dravet Syndrome.
Iwan experiences frequent, prolonged seizures alongside challenges such as intellectual disability, autism, ADHD, and difficulties with speech and mobility. He also has ataxia and hypermobility, affecting his balance and coordination.
Unable to walk unaided after seizures, Iwan relies heavily on his wheelchair. Until recently, he used an adapted buggy that he had outgrown due to his height of nearly five foot ten.
Thanks to Chester-based charity Children Today Charitable Trust, the family received a powered add-on device known as a wheelchair powerpack. This small motorised unit attaches to a manual wheelchair, providing power via a simple push-button control. It helps navigate inclines, uneven terrain, and longer distances without requiring a fully electric wheelchair.
Heather Hughes, Iwan’s mother, said: “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.
“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.”
Heather added the powerpack has given them confidence for upcoming trips, including a festival in Dorset and an annual meeting with other families affected by Dravet Syndrome at Center Parcs.
“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.”
Emma Prescott, charity director at Children Today, said: “Stories like Iwan’s are exactly why we do what we do. These pieces of equipment are genuinely life-changing, not just for the young person, but for the whole family. We’re proud to have played a part in helping Iwan reclaim his independence and enjoy more of the things he loves.”
Children Today supports disabled children and young people across the UK by providing specialised equipment funded entirely by donations. More information is available at www.childrentoday.org.uk.
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