Angela Byrne lives in Queensland, Australia with three daughters of whom she is fiercely proud. Her middle-child, Charlotte (6), was born with early infantile epileptic encephalopathy and cerebral palsy secondary to that, meaning that she was always going to need extra support and help with things as she grew. 

That included using a wheelchair at times, but Angela was aware there was a risk that her daughter would spend her life being defined by a wheelchair.

“I’ve been quite anti-wheelchair ever since Charlotte was a baby, really.” Angela told Firefly. “I was one of those parents saying ‘no, no, she won’t go in a chair’, but she hit five and unfortunately she got too big for a special stroller so she had to go in a wheelchair. But it’s only a transportation device, it’s not her.”

Angela understood that for her daughter to fulfil her own potential, she would have to work harder than other children and it would be tempting to become too dependent on the wheelchair. She also knew that other people might fall into the trap of seeing the chair before they saw the person.

Stigmatised

“Charlotte understands what’s going on around her and I’m sure she can feel the way people look at her sometimes, especially if it’s in a very negative way. It’s definitely much worse in her wheelchair. People, even adults, give the pity-stare when you’re going around the supermarket.”

“She looks perfectly ‘normal’, for wont of a better word, and I guess that’s more confusing for people. If you were to see Charlotte just sitting in a chair you wouldn’t know she had any condition, which probably makes it more confusing, especially for kids, when they see her in her wheelchair.”

So Angela wanted to give Charlotte every opportunity to get out of her chair. Although she has a walking frame, Charlotte isn’t particularly interested in it. She’s obsessed with door handles and opening drawers more than playing with toys but most walkers are so big at the bottom that they hit the door and she couldn’t reach.

Parent problems

So ever since her daughter reached the age of about two-and-a-half, Angela walked with her by standing behind Charlotte and holding her. Obviously it wasn’t practical or easy on her back to walk like that because Charlotte needed 100% support.

Her situation mirrored that of inventor, Debby Elnatan. The exact same challenges led Debby to invent the Upsee. In her attempts to give her two-year-old son every opportunity to walk, Debby found herself on the ground supporting and encouraging him for many back-breaking hours. Her solution was creating the Upsee, for Angela it was finding it.

“It was actually my dad who saw the Upsee online initially, and when we heard about the inventor’s story we thought ‘wow, she does exactly what we do with Charlotte’. It just showed you that there were so many of us in the same position, where the child had the want and the need to walk but didn’t have anything to facilitate it.”

Angela felt the Upsee might be right for Charlotte, even if it just meant she could rummage through the kitchen drawers, but she didn’t want to rush into anything and sought professional advice.

Possibilities for development

“I spoke to Charlotte’s therapist and because it was so new she didn’t know enough about it. When I explained what it was she thought it sounded like exactly the type of thing Charlotte would love, but she couldn’t predict if it would actually help, she could only say that any weight-bearing and any stepping will help build strength and give her more trunk control, so we decided to get it.”

Knowing that there was a chance the Upsee might add to Charlotte’s development as well as her cupboard adventures, Angela was keen to introduce the Upsee to Charlotte’s therapy as soon as possible.

“Having the option of the Upsee was great. It gives her a better look around and a chance to strengthen her legs. She’s got new AFOs and botox injections in her calves recently and along with the Upsee they have made a great difference. The botox gives us about eight solid weeks of better range of movement in her calf so it’s a perfect time to work on her stepping, which then gives her more core strength and just helps everything.”

Freedom for Charlotte

Only time will tell how much the Upsee can add to Charlotte’s development, but in the meantime she’s just having fun.  Charlotte now goes walking around her neighbourhood. She has been to birthday parties at the beach. She walks with her granddad, Pat. Her big sister, Robyn (17) loves seeing Charlotte up and about, and while the little one, Quinn (3), is a little bit too young to understand, she still wants a go in the Upsee herself.

Angela said, “She must have felt so much freer, I guess, without me manipulating her hips and her pelvis. Now I don’t even have to hold her when she’s in it – it’s like ‘okay, you have hands and I have hands, what will we do?’”

Everybody at Firefly is looking forward to seeing how Charlotte progresses. If you also want to find out, sign up to our enewsletter and we’ll send you any updates we get.

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