JJ's story: How even a little support makes a big difference

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JJ, 17, and her family receive regular at-home support from Rose Road. Here, her dad Ben explains why just a few hours of care for so many years have made such a big difference.

"Most things make JJ laugh; she loves Mr Tumble, and if you make any silly noises she’ll copy and laugh at you! She is very easy going.

But she does need 24 hour care to keep her happy and well, and in recent years, I have become her primary carer. Especially as her mum works shifts as an Assistant Paramedic and our four older children are either grown and don't live at home, or have college and work and aren't able to help out as much.

I can’t work as I’m often awake at night listening out in case JJ needs anything, such as medication and repositioning; I usually nap during the day instead when she’s at college.

A little support goes a long way

JJ actually starting receiving Rose Road's support 12 years ago, so they’ve been there for her since she was very young, coming to our home for a couple of hours, one or two evenings a week, to give her dinner and a bath, and just entertain her too.

And it's that steady, long-term support from Rose Road that is making such a difference, now more than ever.

Their help gives me time to tidy round, have my own dinner, or just take a break. And JJ loves her time with her support workers, you can hear her and Sarah (her favourite!) giggling away in the other room, they’re like sisters!

And they have such a genuine bond. Sarah came to see JJ at her school prom and helped her get ready before. Another supported her when her mum and I got married, which made the day so much easier. We’re so grateful that Rose Road go the extra mile to support our family and it’s wonderful the way all the support workers over the years have interacted with JJ and got to know her, it's meant a lot to us.

Sometimes we get to use her hours at the weekend, and they’ll take her to country parks, the beach or to a local farm, while her mum and I spend precious time together or see our other children. It’s nice that the support is flexible. JJ also visits the Bradbury Centre every now and again, where she loves the soft play, sensory room and hydropool.

A future with Rose Road?

We hope once JJ leaves college that she’ll be able to access Rose Road’s day services. For it to continue for her would be wonderful, otherwise it would be me and her all day every day.

She wouldn’t have fun and I’d get no respite from being a parent carer at all.

JJs time with them gives me that break where I just don’t have the same worries. It’s nice knowing she’s having fun too.

It’s little and often, which just helps make each week easier. I hope it continues because those few hours a week make a big difference".

We need to ensure families can rely on us for the long-term, as a trusted, consistent support network that helps make the difference between families coping, and thriving. Please donate online here to support our Christmas Appeal and help more young people like JJ and her family.

Find out more about our Christmas Appeal here, where your donation will be matched and doubled, to double the difference we can make for families this Christmas.