11-year-old Chloe – who her older brother describes as “simply ace” – has a congenital genetic disorder known as 1p36 deletion syndrome, which typically can cause severe physical and intellectual disability.
In Chloe’s case, this condition means she has global development delay and is non-verbal. She also has problems with her digestive system, and so needs a PEG feeding tube as she can’t drink and has previously had an NG tube.
Chloe’s mum, Catherine, says:
“It wasn’t apparent that Chloe had 1p36 deletion syndrome until she was about a year old. It’s a wide-ranging condition, so we had to take each day as it came but Chloe’s development is really coming on. She’s just started at a specialist high school, which she really enjoys.
“Chloe uses a walking frame and can walk a short distance holding someone’s hand. She’s even taken a few independent steps at her new school and we’re hoping that in time she’ll be able to cruise around at home eventually. But she’ll always need mobility equipment, like a wheelchair or buggy, to get out and about.
“As she’s got older it’s become much harder to use the wheelchair, you’re really limited on where you can go as they only really work on flat, even surfaces. We couldn’t even push it over grass. We had a second-hand ‘Tomato jogger’ buggy, which we made do with throughout Covid, but it was on its last legs.”
Children Today helped provide an adapted buggy designed for teenagers and adults, which will last long into Chloe’s teenage years.
“Having the buggy has been amazing. It’s the little things that make a big difference. Being able to take Chloe to watch her big brother play football; going to the local country park for walks together as a family; being able to say ‘yes’ to days out with friends. All these things simply weren’t possible without the buggy!
“Chloe really enjoys being outdoors and feeling the wind in her hair. She loves anything that provides sensory stimulation and motion. With the buggy we can wheel her onto the roundabout in the park, which she loves!
“She’s also very sensitive to light, so it’s been lovely being able to take her on woodland walks as the dappled light is better for her.”
Chloe has scoliosis – curvature of the spine – and has recently started wearing a spinal brace to help with the condition. The new buggy is hammock-style and has a recline function, which means Chloe is much more comfortable in the buggy than her wheelchair.
“The recline function is a godsend! Since Chloe’s had to a wear a back brace it can be difficult for her to stay comfortable in the wheelchair but now if she gets tired while we’re out about she can lie back and rest.
“The wheelchair is much too heavy and bulky for me to put in the boot of the car on my own, but the buggy is really lightweight so I can manage it on my own and it’s so much easier to push. We’d really struggle without it now. I’d say we use the buggy about 80 per cent of the time when we go out.”