Rachel Williams has a rare condition called sacral agenesis also known as Caudal regression syndrome. It is a rare birth defect where the sacrum section of the spine is completely missing. “My spinal cord is damaged and there's lots of things going on that affects mostly the nerves waist down. So, bowel, bladder and legs. My continence was affected and I've had surgery to remove my bladder because that was causing the problems. They built me a new one out of a piece of my ilium and I now have to use a catheter through my stomach to empty my bladder, it's called a Mitrofanoff. I can't walk anymore and I rely on my wheelchair, but I'm very mobile, very active.”

Rachel still suffers from a lot of pain, has bowel issues and lots of inflammatory bowel syndrome type symptoms to control. To try to control her issues via diet she takes a probiotic when she can.

“When the kids get to teenagers, it's quite difficult. We've got a kids' bank locally, which is amazing, they do try and get a lot of uniforms in, but they didn't do my son’s age. It's usually the younger kids' sizes that come through, you very rarely get an adult-size blazer or an adult-size PE top coming through, so you end up having to buy them. You can't access the help for teenagers. We have got local community groups where you can go and get fed and do things with your child. They're all aimed at younger kids. If your child's in high school, you just can't really access anything so it's difficult.”

With all the increases in the cost of living hitting her budget Rachel is struggling to get adaptions and aids that will help her dramatically. “Anything that I need for my disability is covered by me. I do get a wheelchair, but it's very standard. You don't get a lot of things that could help you. At the minute I'm having trouble with my back. So, the wheelchair services fitted a certain back on my chair. It's all they could offer, but if I went privately, I could buy a back for my wheelchair that actually supports me. Unfortunately, that cost would probably be about £1000. I struggle with sitting on the sofa, and there's a company that sells P-pods for disabled people to sit in, it's a bit like a big beanbag, but it's not as unstable, it's rigid. I would really benefit from one of them. Again, unfortunately, that’s over £1000.”

Adaptions like this would be a huge help to Rachel to improve her standard of life but are out of her reach more than ever due to their costs whilst trying to balance an already stretched budget. Eventually, she will need a power wheelchair but with that would come a new array of issues that will need funding such as moving home and getting a new car that would accommodate a larger wheelchair. A simple power pack now would help but at a cost of over £5000, it is beyond her reach as there is no funding available to help.

The increased cost of all the usual bills has also been a worry for the family, “paying the bills is difficult, things like the car insurance. If it had gone up, like they said it was going to, over a £500 increase, we would have struggled. I need the car. I can get the bus, but for my hospital appointments, I need a car. The buses have got a rule that only one wheelchair is on at a time, the other week, I waited for five because the other four had wheelchair users on them. If I had an appointment, I would have missed it. I can't rely on buses for appointments, especially in Liverpool because I'd have to take two buses.”

Rachel has received help in funding some things via grants and charities but it is not the answer to the crisis.