Alison Parr - founder of Ruby's Fund

PUBLISHED: 00:00 23 September 2019

Alison Parr and her daughter Ruby Photo: Donna Clifford

Alison Parr and her daughter Ruby Photo: Donna Clifford

NOT Archant

Alison Parr from Congleton has spent years creating a safe space for her daughter Ruby and children like her - now she's fighting to keep it.

When our daughter Ruby was less than a year old she was diagnosed with IDIC 15, a chromosomal abnormality that is incredibly rare.

With so little research into it we had no idea what the future would hold. She's 12 now and she can't walk or talk and has up to 30 seizures a day.

The early days were lonely. I stopped going to baby groups as I felt I no longer fitted in. Ruby wasn't advancing in the same way other babies were, and it felt like we had to explain ourselves all the time, which was heartbreaking.

I knew we weren't the only family going through something like this, but our health visitors couldn't direct us to any kind of support locally. So in 2008 Ruby's Fund was born.

Five years ago, after years of fundraising, we opened up the centre in Congleton. It's somewhere for both children and their carers. We offer one-to-one support for kids, have a sensory room and garden, as well as a social café and a soft play area. We also have a therapy room where parents and carers can have massages and spa treatments. I know how important it is to have a tiny bit of respite knowing your child is being cared for.

The social side of the centre is so important; we're all on a journey that we didn't expect to be on, and it's a space for parents to open up about how they're feeling.

But now the building is to be sold. It's valued at around £295,000 and we need to raise at least £60,000 very quickly just to cover the deposit.

We've already managed to raise £30,000 and have loads of events in place over the coming months, with many schools, church groups and other organisations doing a huge amount for us too. I am working seven days a week to try and raise the money, and I'm not stopping! It's mentally and physically exhausting but it's so important. I really do not want to lose our building. It's like a second home to so many of us.

It's really overwhelming to see everyone rallying together to help us. I don't think I understood quite how much Ruby's Fund means to people. I do it every single day so it's just part of my life, but I'm starting to realise the love and appreciation that people have for the centre, and how far that ripples out into the surrounding community. u

To donate to Ruby's Fund, visit cafdonate.cafonline.org/10933#/DonationDetails

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