Choosing where we go – and how and when we get there – is something many of us take for granted. But for George Beard and 75,000 young wheelchair users like him in the UK, that’s not the case; for those with mobility issues, having the right wheelchair can be the difference between reliance and independence.

Charity Whizz Kidz has been there for young wheelchair users and their families for over 30 years, creating confidence-building activities for its community, and campaigning for a more inclusive world. On a practical note, it facilitates the provision of high-quality mobility equipment to those unable to access it through local services. One such recipient is George, 11, who has communication challenges alongside mobility needs, and relies on his power chair to navigate his world. Here, his mother, Sarah, explains how Whizz Kidz has supported her family on its journey to a new way of life.

‘For a while when George was tiny, we thought he was going to be a ‘SWAN baby’ – a term applied to children who have ‘Syndromes Without A Name’ – but it didn’t matter because George was George.

Five years later, he was finally diagnosed with a rare mutation of his ATP8A2 gene, which didn’t change anything but helped us understand what was going on.

We realised quite early that George wasn’t meeting his milestones – he wasn’t rolling or holding his head up like babies of a similar age. The health visitor pulled him up one day and noticed his head didn’t come up with his body, which is called head lag, and that’s when alarm bells began to ring.

What it means is that George’s body doesn’t produce what it needs to enable strong muscle tone, so he needs different seating systems to help support that. When he was younger, we used buggies but as he got bigger, we wanted him to be as independent as he could be.

‘He could drive up to a bush and feel the leaves – it was his choice’

Aged about three, he got a Wizzybug [a simple powered wheelchair for young children], which he could use to get himself from A to B. He could decide where he wanted to go, and when and how he wanted to get there. It was great because it meant we didn’t have to orchestrate everything – we could just stand and watch him from afar. He could drive up to a bush and feel the leaves – it was his choice and we could watch him do it. It was amazing.

But after a couple of years, he needed to progress to a powered wheelchair. That’s when Whizz Kidz came into our lives. You can get a power chair from [NHS] Wheelchair Services but it’s a complicated process. You have an assessment and if you can drive the power chair at the assessment, you get the wheelchair. Unfortunately, we didn’t pass the assessment but George’s school, PACE – an independent special needs school in Aylesbury – pointed us towards Whizz Kidz, who made it all possible.

Why Whizz Kidz is so special

As the UK’s leading charity for wheelchair users up to 25 years old, Whizz Kidz creates opportunities for young wheelchair users to get the equipment, skills and confidence to go further. With its help, users can live life as independently as possible, enjoying the opportunities and activities that so many others take for granted.

About five years ago, with Whizz Kidz’ support, George got his power chair – and it’s been just brilliant. Different children have different capabilities and needs but this is all tailor-made for him, with all the fittings and controls he needs. And Whizz Kidz have been there through all our appointments, helping to make sure that George gets the best support possible.

He has four switches: forwards, backwards, left and right, as well as a console table he can use to communicate. He picked up how to control the power chair straight away and drives with such care and precision – he’s a better driver than a lot of adults!

It’s a wonderful thing to go for a walk with him and have him able to choose where we’re going. He can now move alongside friends and family members on his own, move hand in hand with someone or choose to back away from something if that’s what he decides. I specifically remember when we first got it, I could go in front of him and face him, and he could choose to come towards me and give me a kiss. That was really beautiful.

We also took the power chair on a Disney cruise, which we would never have been able to do before. He can spend all day in the chair – and even eat in it – so we used it for everything. George got to drive around the whole ship – we used to go up and down the corridors, counting the portholes.

‘Whizz Kidz are with us every step of the way’

We meet up with the occupational therapist and wheelchair technicians every three to four months to review and check on sizing etc, and Whizz Kidz are with us every step of the way. We’ve formed strong bonds and relationships with two of the team in particular: Marja and John. They are always on hand with ideas and advice about how we can improve the power chair for George, so he can get the best out of it.

The power chair has honestly changed George’s life. It enables him to independently get from A to B and explore what he wants, when he wants, where he wants. It’s all about George being able to take ownership for his own actions – and that has made such a difference to all of us.’