We often get asked why the children and young people we support need specialist equipment. ‘But haven’t they already got a wheelchair?’ and ‘why is it so expensive though?’ are questions we frequently face, and they are very good questions.
The truth is there is no ‘one size fits all’ when it comes to disability. All too often we see children and their families struggling with equipment that doesn’t suit their lifestyle, needs and ambitions.
Have you ever tried pushing a teenager or young adult in a wheelchair? It’s really quite exhausting for any great distance, even on level ground. So, now imagine how a 5ft 4inch petite mum manages to push her 6ft son in a manual wheelchair up the hill they live on because she can’t fit his powered wheelchair in her small hatchback. The answer is they don’t! They can’t afford a new, bigger car and it’s not physically possible to get out and about in the manual wheelchair, so they are often stuck at home, becoming more and more isolated. But a wheelchair power-pack could solve these problems!
Having a basic wheelchair might mean you can leave the house with your child, but more often than not it won’t be suitable to take on the beach or into the woods for a family outing – but an all-terrain buggy is.
Your existing wheelchair may enable you to get to school, but not necessarily join in as you’ll be forced to sit away from the rest of your friends – but a compact wheelchair could change that.
As children grow into teenagers and young adults, with that, often comes a desire for more freedom and greater independence. They don’t want to be pushed around by friends or family. They don’t want to have help using the toilet unnecessarily. They don’t want to be forced to choose a mediocre University to study at just because it’s more accessible than their first choice. What they want is to be given the opportunity to do all these things and much more for themselves, and so often all that stands in their way is a prohibitively expensive piece of equipment.
An adapted buggy; sit-to-stand wheelchair or wheelchair power-pack, for instance, may just be the answer to all their dreams!
Kate, the mum of Heidi-Lou from Salford, knows all too well what it’s like to manage with a wheelchair that isn’t fit for purpose. She explains:
“The wheelchair provided by wheelchair services simply doesn’t meet her needs, so at the moment she’s in a buggy, which is really bulky and heavy. This means she’s often excluded from being able to fully join in at mealtimes with the rest of the family or playing with her friends at school. I also find it really difficult to push her very far in it, especially in the bad weather when it gets muddy.
“Heidi-Lou is so desperate to be more independent. I feel I owe it to her to help her be as independent as she possibly can and encourage her determination. She is capable of transferring into a standing position, but not from her buggy, which means she has to be hoisted in and out of it at school and she gets really upset that she isn’t given the opportunity to even try.”
Nine-year-old Heidi-Lou has Cerebral Palsy and is due to have major surgery to reduce her muscle stiffness. The operation Selective Dorzal Rhizotomy (SDR), which the family has had to self-fund, involves cutting the nerves in her spine that are causing the most tension to reduce spasticity.
Single-mum Kate is keen to secure the equipment in time to help Heidi-Lou’s rehabilitation. She explains:
“It would be amazing if we could get this wheelchair in time for when she’s had the SDR surgery, as it would be mean she can start learning how to manage her movement correctly straight away, rather than have to re-learn when the new chair arrives.
“It’s been such a battle trying to get the right equipment and support for Heidi-Lou. There’s a four-month waiting list just to be seen by the NHS wheelchair services team and no guarantee that they will support our application for this lightweight, more compact wheelchair. They tend to focus on whether the equipment provides the right postural support, but don’t necessarily take into account the social side of things and how that impacts her mood and mental wellbeing.”
Children Today Charitable Trust has pledged a significant sum towards the wheelchair and helped the family launch a fundraising appeal to help raise the remaining £2,005 needed.
To make a donation to help fund Heidi-Lou’s life-changing wheelchair visit her online fundraising page here: www.childrentoday.org.uk/helpheidi-lou.
Any funds raised over and above what is needed to provide this equipment will go towards helping fund vitally important equipment for other vulnerable children and young people living with a disability.