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Darren's story

 

I can be up 20-30 times during a single night to care for Amelie. But as well as dealing with the physical strain of looking after her, I'm also having to deal with utilities companies chasing debt because I cannot afford to run the electrical equipment that keeps her alive. 

 

Photo of Darren

Darren and Lesley have four daughters – Gabrielle, 19, Olivia, 17, Fleur, 10 and Amélie, 9 who has CHARGE syndrome, a rare condition resulting in multiple and profound disabilities.

When Lesley became pregnant with Amélie both she and Darren were in full-time employment.

Alongside coming to terms with Amélie’s disabilities, they had to make difficult decisions about how they could cope financially, especially when Darren was made redundant.

Lesley works full time and takes on extra shifts, but still the costs of care associated with Amélie’s health are so high that the family has accrued massive debts.

Unable to find adequate practical or financial support, Darren and Lesley feel very alone in a system which seems utterly oblivious to their situation.

Darren said:

"Amélie is absolutely fantastic, she’s an absolute joy. But stress levels are through the roof.

Amélie needs care 24 hours a day, every day and because of her medical needs and the lack of professionals who also have the sign language skills to communicate with Amélie it is almost impossible to get respite care.

We have battled to get Direct Payments from the council to buy in care support and have been given the equivalent of 16 hours at £7.20 an hour. If we could find the right care services, I very much doubt it would be available at that rate.

But if I could change anything it would be the financial burden. Even if everything in the house is going well, there is still that financial worry hanging over us.

I think people assume that there are loads of benefits supporting families like us. But that’s not the case at all. Now Lesley works full time with extra shifts and I receive a Carers Allowance of £58 a week. I’d love to work, but show me the job I could do alongside the care Amélie needs.

We used to have a good social life. I played rugby for my local club and made some great friends there, many of whom are still very supportive. But now buying clothes and socialising are no longer a priority or affordable for either of us."

THIS IS CARING

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