My husband and I were both working as chartered accountants when my daughter was born with cerebral palsy. We were earning good money and more than able to look after our three children and enjoy a decent lifestyle. But by the time she was two we started to realise what looking after a child with her disabilities would mean.
It wasn’t long before I had to give up work to be her main carer. All parents want to give their children the best start in life. I’m just not prepared to lower my expectations for her. We couldn’t cure her condition but if we committed to getting her the best therapy and opportunities we could, it would at least ensure she had the best quality of life possible – and hopefully a happy one too . As well as being her main carer, researching and organising her treatment is close to a full-time job.
Initially I wasn’t sure if CABA would help us. My husband earns a good wage, and many charities would look at that and reject us. But CABA really looked at the detail, and saw that we were finding it very hard to cope. Looking after a child with disabilities is so very expensive.
You need so much equipment – which she quickly grows out of – and the physical therapy bills just keep coming. Plus we need to buy in care so that our other children don’t miss out on things too.
My husband works very long hours, him being the main breadwinner and having a proper career means that there is only one of us here most of the time. A family of five with a very disabled daughter simply takes more than we’ve got. When I first called they sent someone to talk to us. I wanted to know exactly how they might be able to help us. She was very good. As well as talking to us about all the obvious things, she also suggested that we apply for a respite holiday.
To be honest, a holiday was the last thing I was thinking about. When you have a child who needs so much, you give up thinking about luxuries. We just couldn’t pay for a family holiday. We’d spend the whole trip feeling guilty and weighing it up against things we should be funding for our daughter.
But CABA pointed out how much pressure we’d been under, and how important it is to relax as a family. In the end our whole family went to the Canary Islands. It was brilliant and for the first time since she was born we just enjoyed our daughter and had fun as a normal family would.
Over the years they have helped us by funding a course of physical therapy until we developed a plan to fund it ourselves. They have also paid for modifications to doors and some equipment that enables our daughter to be more independent.
Most recently they helped us out when we were extending our house. We had managed to pay for most of the extension ourselves, but we were struggling to pay for the lift and one or two other bits. Clinicians told us that many families make the mistake of building a special wing on the ground floor. This means a child can become isolated. She’s a little girl – she needs the same freedom to move around the house as our other two children. We were determined for her to have a lift so she could play in the other bedrooms and be integrated with the rest of the family.
CABA understood how important that was to us and gave a grant for that. They also funded a level entrance to the house. She needs that because she uses a wheelchair. We now have a house that she can grow up in. I won’t be carrying her up stairs or lifting her into a normal bath. That is a huge worry off our minds.
CABA have saved us a lot of stress and heartache. It’s not over. Our situation is not one that can be simply resolved. There’s always something else – next we’ll be looking to pay for a new wheelchair and an operation in America. The huge expenses just keep coming. CABA can’t help us with everything we need, but knowing that they are there to ask, and that they will listen carefully to what’s going on, is just so important to us.
For advice and information call +44 (0) 1788 556 366 or chat to an advisor online 24 hours a day.
*Some personal details of this client have been changed to protect their identity.