Help Claire get a new chair

Claire has Limb Girdle Muscular Dystrophy, it’s a genetic condition that progressively gets worse over time. It causes muscle weakness and atrophy, primarily around the hips and shoulders but since these muscles are so important to everything that we do it has a major knock on effect to all other muscles. Claire can’t walk, can’t stand and has very limited movement in her arms.

Claire uses a wheelchair, she is in it from the moment she gets out of bed in the morning until she goes back to bed at night. It’s her independence. Her current wheelchair is from the wheelchair services, and we are grateful that we have been able to have a chair from there but it’s no longer suitable and like with most things the service and support we get from them has declined over time.

It's almost 5 years since they were going to get a secondary controller put on the back of the chair so I could drive it when she was struggling. . . we are still waiting for it.

What makes her current chair unsuitable? It just doesn’t offer her the support she needs. She often finds herself off balance in it and falling over. She is struggling to keep her arm and hand in the correct position to drive when outside and wearing a jacket or jumper. The slightest bump or uneven pavement and she can’t keep herself in position. And it just has no grip, the wheels will often slip and slide when there is the slightest slope, even on a concrete path. When it’s cold out her hands just stop working and she can’t control the chair.

Claire had lost her confidence when out and about before covid hit, then during covid she just didn’t leave the house. By the time she felt safe to leave the house again her confidence in the chair was just completely gone. She would go for multiple months without going outside.

We got Ruckus our 6 months old golden retriever as a way to help get Claire out and about more often. It worked well to begin with but then…

She is going to hate me talking about this. The last couple of times she came out with me and Ruckus for a walk it got to the point where she just couldn’t control the chair anymore. She was essential stuck in the middle of the park and she got really upset, Claire is quite reserved and it has to be really bad for her to get so upset in public. It’s heart breaking. I had to walk bent over driving the chair (which I’m rubbish at) and control Ruckus. It’s left Claire even more reluctant to go out, in fact, she is straight-up refusing.

So we are at the point where we really need to buy a more suitable chair for Claire to retain her independence and for her to get outside again. The only problem being that wheelchairs are expensive.

The two chairs that Claire likes start at £20,000 but we are more realistically looking at £25,000+ once it’s customised to her needs. A good cushion can run as much as £800, we will need a companion controller on the back of the chair for the times where she still struggles, we will need a more sensitive controller for her, we will need extra support in the backrest, etc. All these things add to the cost and quickly mount up. We will potentially need to replace the stand aid we use to transfer her in and out of the chair (they cost around £3000), the current one might not work with the newer designs of chairs.

Claire doesn’t like asking for help but as time goes by we get less and less support. The equipment we have at home, it’s become easier just to fund repairs, maintenance contracts and new parts ourself rather than go through the hell of trying to get the council to replace the bits (even though they own it all and have a duty to care for it). We are in a fortunate position that we can afford to do that but it adds up.

Claire has a web design business and she has worked so hard over the years to get us our home and take care of us all. We know we will need to pay for most of the chair ourselves but any help you would like to offer would be greatly appreciated. Claire doesn’t like to put herself out there and she doesn’t like asking for help. She is kind and caring. She works so hard, most days she will work from early morning right up until bedtime. She will always put everyone else’s needs before her own. It’s like pulling teeth getting her to treat herself or buy herself something she needs but if it was me or the cats or the dog needing something she would buy it in a heartbeat. She has always put everyone else first in the 20 years I’ve know her.

She needs something for her now.

I just want her to feel secure and safe in her chair, for her to be able to get out the house. Our big dreams are an easy walk in the park with Ruckus!

- Ewan

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A note from the organizer: Hey y'all, I'm sure most of you know who Ewan Cheyne (Mutley's Snaps) and his amazing wife Claire Cheyne are, but if you don't they are the kindest, most sarcastic souls in Scotland.

Claire's been needing a new chair for a long time now and instead of creating an Only Fans page (Only Wheels?), I've decided to create a Go Fund Me, because if you're following along on Facebook, you'll notice they need an extra push to actually ask for help. So I set this up and got Ewan to give me a bit more of their story.

Any little bit of contribution helps and is greatly appreciated.

Cheers,

Kristen

PS - Ewan might kill me for calling him kind. ;)