Scope, the disability charity, is running an interesting campaign at the moment about the extra costs of being disabled. Its online quiz ‘The price is wrong’ is quite the eye-opener. 

We’re not quite in the realms of having to buy a wheelchair that’s more expensive than an Audi, but I know first-hand how expensive special needs equipment can be. We’re looking at buggies for Ted at the moment and some of the quotes are eye-watering.

Obviously a lot of this is down to the engineering that goes into some of the more specialist equipment, but knowing the reasons doesn’t change the price tag. Unfortunately Ted’s needs are complex and severe so he needs the maximum support from a chair.

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Ted using one of the least expensive special needs aids – a Go-To seat from Firefly, a mere snip at £120 ish

At the moment, he’s in a high street Maclaren, which he loves, but his posture is appalling and we can’t go on with it much longer. Bad posture means the risk of future complications. He needs his hips and pelvis to be held in position and he slumps worryingly in the buggy giving me fears over scoliosis. If his spine starts curving, that affects his lungs and puts him at greater risk of chest infections and pneumonia. And – fact of the day – I was once told that pneumonia is the biggest killer of kids with CP. Scary but true.

At our visit to Wheelchair Services, they showed us the ONE buggy that they provide for Ted’s age/size. Not only was it built like a tank, it looked every inch the ugly, one-size-fits-all NHS equipment. Crucially though, it didn’t work for Ted. One size won’t fit all because disability doesn’t work like that.

Lovely as the lady doing our appointment was, there were no options that suited Ted. That’s OK, I was expecting it. Judging from the forums I’m on, not many people are suited to the free equipment offered. My OT had also warned me that you can get a voucher towards the cost of a suitable chair. We were offered £1,400 which should cover 20-50% of the cost of a chair. Eeep!

So I’m fundraising again to help Ted get the chair he needs. I’m not doing anything big but I am taking part in a 5K Color Me Rad race, with a bunch of other lovely friends and friends of friends. That distance is about all I’m up to at the moment. Training for anything more would be impossible but I’m proud to put my trainers on for Ted and help get him what he needs. After all, that’s a mum’s job.

Donate to our page (if you feel so inclined) here or come down and cheer us on (and get a cuddle from Ted) on Sunday 31st August at the Bath & West Showground Shepton Mallett 

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