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Julie's story: "A mum and a carer"

Julie-ClarkMy name is Julie and I am a mum and a carer. I care for my 15-year-old disabled son Lewis and I am what’s known as a parent carer.

It’s a real shock when you’re told your child has a disability. When you become a parent you expect to care for your child and you expect there to be challenges along the way – it’s part and parcel of being a parent. But when they have a disability, your role as mum or dad, as nurturer and provider, becomes much, much more than you ever imagined.

My precious son Lewis was born with drug resistant epilepsy, cerebral palsy and has an autism spectrum disorder. At the age of 6 he needed major brain surgery to try and manage his epilepsy. This could only be done by a specialist team at a children’s hospital, and meant that for the following five years I travelled regularly with Lewis from our home in Renfrewshire, Scotland to London for treatment.

Looking after Lewis can be incredibly tiring and stressful. His care needs are vast and complex. As well as his pre-existing medical conditions, he also has a low immune system, leaving his health fragile and making him prone to illness. Lewis depends on me for everything. Trying to fulfill Lewis' every need is a daily challenge. This won’t change. Lewis' medical problems and complexities are lifelong, so my caring role is lifelong as well.

The physical and emotional demands of caring have also taken a toll on my health. When Lewis had his surgery I suffered terribly. But there just wasn’t time for me to think about me.

When I was told Lewis was disabled, so much was unknown. I had no idea what I needed to know, who I needed to talk to, where to begin. But one thing I didn’t expect was just how difficult it would be to get what Lewis and I needed, or how many fights I would have to face.

If you have children and grandchildren then you’ll know that all you ever want is what’s best for them. I had to fight for everything – help, support, the right education. I came up against so many brick walls.

Eventually my fight led me to Carers UK and instantly I felt supported.

The advice, information and emotional support that Carers UK provides is invaluable. If it’s practical help you need to make life a bit easier or advice on benefits, their skilled helpline advisors are on hand to help. If it’s someone to tell when it’s all getting too much, their dedicated team of trained volunteers provide listening support.

 

A gift of £10 today, could help Carers UK provide this vital support for another parent or family – whenever things get too much.

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