How the smallest wheelchair makes the biggest difference

One hour. That’s how long it took three-and-a-half-year-old Jake, from getting the right wheelchair to become a literal whizz kid zipping around his house. And most of that was the car journey back home with mum, Liz, dad Matt and big brother Jamie from the handover of his tiny Panthera Micro 3 wheelchair at our Billingshurst clinic.

“He’s a natural,” Liz says. “We got home, we put him in it, and I FaceTimed my sister and his grandma to show them. And he's whizzing around the house straight away! There was no delay.”

“And he asks to be in it all the time,” Liz says. “He calls it his ‘roll roll’. First thing he says in the morning is ‘roll roll’, because he wants to be in his wheelchair. And when we go out, he says to me, ‘roll roll’. He says, ‘Don't forget’. Don't forget to bring my wheelchair. I'm like, no, I've got it, don't worry.”

Jake's progress: first push to Whizz Kid

Rewind to that first hour, and you can see Jake’s first push in his new wheelchair, captured on video in our clinic. Whizz Kidz’s clinicians and engineers, like Sarah Wallace and John Bearman, who worked with Jake, will confirm that many of the youngest children they see seem to understand how to manoeuvre their new wheelchair as soon as they sit in it. Jake gets the idea of what to do by pushing towards Quack Quack, his beloved toy penguin.

Just three weeks later, Liz shared this video of Jake in his new chair on the way to meet his brother Jamie from school. The progress is impressive. Along with the turn of speed and steering upgrade, Quack Quack now has his own spot on board the footplate and goes on all of Jake’s adventures with him.

Jake has another passion, which is reflected in his choice of wheelchair footplate wingman. “He’s obsessed with birds,” says Liz. “Anything bird related, birds in the garden, rubber ducks in the bath, 'Sarah and Duck', 'Happy Feet'. He is bird-mad. It's slightly unusual.” Jake also loves moving around, being active and learning how things work. “As soon as you give him something, he’s looking to see how it’s put together,” she says.

How Jake is writing his own rules

Described as “independent, adventurous and cheeky” by Liz, Jake has an incredibly rare combination of two conditions. He has dwarfism (achondroplasia). “We found out about that when I was pregnant. But then when he was a year old, he was having routine tests, there were a few issues with some of his blood tests, and they did some more testing, and they found out he's also got Duchenne muscular dystrophy.”

“He's the only person to have both ever. There isn't anybody else or any other record of anybody else with both disabilities.”

"We know what having dwarfism means, and we also know what having Duchenne’s means. It’s life-limiting. A muscle-wasting disability. So he'll gradually lose the ability to use his muscles, but we don't know how the two are going to interact or how they're interacting—it’s all new. So we don't know what the future looks like. It’s like Jake is choosing his own path and writing his own rules."

“There are no guidelines for Jake. He's creating his own guidelines.”

The right wheelchair at the right time

Liz outlines some of Jake's daily challenges and how much progress he’s making. “Currently, he's unable to walk. He's unable to sit up unaided. He's delayed with gross motor skills and fine motor skills. So his speech and things are delayed,” she says. “But they are coming on. He's now starting to really develop. Up until a year ago, he wasn't able to eat, but we've now had an operation. So now he can eat and drink and has come on loads since then.”

"All the things that a typical three-year-old could do, all the toys a typical three-year-old could do are all way too big or out of his reach. So, he wants to do all the same things that every other three-year-old does. We just have to try and bring everything down to his height or level so he can do everything that all the other three-year-olds are doing."

The time was so right for Jake to get his new wheelchair. The family’s local wheelchair services wouldn’t give him a wheelchair because of his size. The NHS usually offers children under five buggies, which need to be pushed by parents and carers. Jake was part of Whizz Kidz’s under 5s fast track scheme, which recognises the urgency of getting some of our youngest people the wheelchair they need as they develop their independence and explore the world, which is crucial when they start preschool and school.

"We were told that he won't get a wheelchair because of his size,” Liz says. “He can fit in a buggy. So while he fits in a buggy, you don't need a wheelchair.”

This meant that before Jake got his wheelchair from Whizz Kidz, his only way of moving around independently was rolling on the floor. If he wanted to sit up, look at anything at a higher level or get around anywhere that wasn’t a safe space at home, “we had to carry him, or he had to be in a pushchair,” she says. “He was continuously relying on someone else moving him around, getting him in a position so he could sit at a little table and do something. And we’d have to sit with him.” 

Going out, Jake would be pushed in a buggy. Liz says: “We’d have to push him so he would not be able to independently decide to go and do something or go and look at something. He'd have to point and make a sign that he wants to go over there, and then we take him over there. Or if he wanted to look at something, we would have to pick him up and carry him around to show him things. And we basically had to be his legs and carry him everywhere and do everything because he couldn't do it himself.”

This must have made Jake feel frustrated, we suggest.  “He used to be really frustrated and angry that he'd missed out,” Liz says. “And I think he's at an age where he knows he wants to do stuff and can't get to it. So he was frustrated and almost angry in a three-year-old way that he couldn't do whatever."

The real difference

The right wheelchair made a difference straight away. How did it feel for his parents to see Jake move himself in his wheelchair for the first time?

“We were just really happy and so proud of him. Both me and Matt, my husband, said when we got home within an hour of him being in the wheelchair, we couldn't believe we'd been letting him just roll everywhere. We can't believe it's taken that long for us to get him into something that gives him independence. We now think it's absolutely crazy that the only way he got around was by rolling on the floor and how that was not a good solution and how it feels right that he's in a wheelchair."

Was there a moment when you realised the difference the new wheelchair had had on Jake and your life?

“ For Jake, as soon as we got home – because suddenly he wheeled over to a toy and just started playing with it without one of us. So, for him, I think it was instant.

“For us, I think it took a few days of thinking that this has changed his life and what he can do. And we always thought we were getting a wheelchair so when we go out and about, he can have a bit of independence. But we never really realised how different it was going to make our home life. Now, we've just got two kids running around rather than his older brother and then Jake rolling [on the floor].”

Jamie and Jake

Liz tells us that Jake’s relationship with his big brother Jamie (aged 8) has also developed in new positive ways. "I think it's good for Jamie because Jake can become more involved in what Jamie's doing. So when they're playing in the garden at the table, Jake can be almost at Jamie's level doing the same thing, and they can chase a bit more. They can both go to the park and Jake, in his wheelchair, starts knocking a football around with the wheel at the front. And I think it's good for Jamie, for his little brother not to be seen as a baby anymore, to be doing slightly more grown-up things that our friends' little brothers are doing.”

Has the new wheelchair also impacted what you could do as a family?

"Now we can go and start exploring places, and we will go out, we'll go to the shops, and he can go his own way through the shop, and he can make his own choices about what he wants to look at and where he wants to go. And we're much more like every other three-year-old when we go, 'No, you can't go that way.' He can have a tantrum and have a strop, and go off in his own direction and just have his own sort of thought process in a way, like his own ideas of what he wants to do, and he can then carry them out.

So, does his new wheelchair sometimes let him misbehave? 

“Oh, yeah, hugely. Definitely.  We'll go, 'Don't go near the mud,' straight away near the mud. 'Don't go near a puddle,' straight away, that's where he wants to be, in a puddle. And if we go, 'Right, come on, we've got to go upstairs,' he'll fly off the other way at speed, so we have to run after him to try and catch him.

We bet he’s not easy to catch in that chair, either.

“No, he isn’t. He has two gears, like the cruising speed, and then suddenly, when we're trying to get hold of him, he suddenly gets it going a bit quicker, like, 'Come back!' Yeah, I think it's so important that you know, he can misbehave as well because he's got that independence.”

Have his frustration levels come down with the new chair?

“Oh, massively. He's so much happier, and he's more content. And he also just likes being in the wheelchair.

"It's fun. He'll whizz around and push himself backwards to see how far he can go before he bumps into something. He searches out anything with a slope so he can whizz down it, and he's just happier.”

“If we’re trying to get him to go in a direction he doesn't want to go to, he can stop it really quickly, spin it around and off he goes. And he loves being chased in it or chasing his brother and running our feet over.”

The right wheelchair

The right wheelchair for Jake was a Panthera Micro 3. It’s one of the smallest manual wheelchairs available, and incredibly lightweight and easy to handle for children under 5. Featuring the same angled wheels and pneumatic tyres of a racing chair, we wondered if it had attracted any attention.

“Oh, every child loves his wheelchair. Actually, everyone loves his wheelchair. It's very cool. So, all his cousins now have a wheelchair on their Christmas list. And loads of adults have also come up to us and say, "That is the coolest wheelchair we've ever seen.” And it attracts a lot of attention because I think everyone is amazed to see it, but it's not something you see every day. We've never seen anything like it. But everyone just thinks it's amazing and super cool. Because he's whizzing around and turning at speed and going around the corner on one wheel. Everyone's like, ‘Whoa, he's good at that, isn't he?’”

So what can Jake do now with the right wheelchair, which he couldn’t do before?

“He can do what he wants rather than what we think he wants. He can go where he wants, when he wants, and within his own time frame. And if he doesn't want to do something that we're trying to make him do, he can get away. When we go out, he can explore places without us having to explore them with him.”

Jake plans to zip (safely) around preschool in September in his new wheelchair. We asked Liz what her hopes for the future were.

“Well, for Jake, probably just for him to carry on having independence, carry on developing the skills so he can do what he wants, when he wants and have the freedom to enjoy being a child like everybody else at his age and just be happy. As long as he's enjoying himself and he's happy, we'll worry about everything else when we need to.”

The right wheelchair at the right time has made a real difference to Jake. What would she tell people about Whizz Kidz?
“That they're amazing, that they've given our son the opportunity to have his own independence and his own freedom and they've changed our son's life immeasurably,” she says. Without Whizz Kidz, Liz thinks that children “would be stuck, not being able to move around freely or being restricted from having the freedom everyone should have.”

How would she sum up the difference that the right wheelchair has made for Jake?

“It’s definitely life-changing, and it's allowed him to be a three-year-old. It's allowed him to be a happy child enjoying his life.”

Update: Jake on a roll – over bubble wrap!

Jake's mum Liz was kind enough to show us how Jake's practicing his wheelchair turning skills, using a sheet of bubble wrap!

We know that with the right equipment and support, young wheelchair users like Jake are on a roll. Find out more about why the right wheelchair is the real difference.