When Sarah Kiley and Nannette Holliday suddenly found they were without support after their special needs health visitor retired, they formed their own volunteer-led group, High 5.
The Chorley-based charity provides activities for disabled children and their families around Lancashire.
Mother-of-two Sarah, whose youngest son, Philip, 11, has Down’s Syndrome, says: “Nannette and I have know each for years through Broadoaks Child Development Centre, in Leyland, as both our children have Down’s Syndrome. We have offered each other a lot of support and made other great friends.
“There was a special needs health visitor who used to hold group sessions once a month so parents could socialise but once she retired, parents were isolated.
“It is horrendously difficult looking after a child with special needs and so we decided to set something up ourselves.
“Places like The Space Centre, in Ashton, which provides sensory stimulation for children with special needs, allows you to hire a room for around £45 but one family would not really be able to afford that on their own, especially when soft play for a mainstream child can be under £5.
“So a group of us put in money to hire The Space Centre. It worked really well and so we began to hold car boot sales to raise funds to make our group official.
“We got some funding from Duchy of Lancaster Benevolent Fund and we were awarded £9,400 lottery funding. We had grown from six families to 20 – it just really exploded.
“We wanted to create activities that children with special needs and their siblings could attend.
“It was such a simple idea and it worked really well as the siblings gelled together.
“They could support each other at their level and realise although their family was different, they were not the only ones.
“We started off with coffee mornings and then organised craft activities, which was brilliant as families were making something together and the conversations were positive.”
High 5, which was launched in April 2014, now supports more than 50 families on a regular basis.
The charity hosts 130 activities a year.
These include craft sessions, trampolining, gymnastics, messy play and biscuit making. There are also parent and sibling respite stay overs and a visit to see Santa and his reindeer.
Sarah, of Chorley, adds: “These sessions are so important for the whole family. The sibling and parent stay overs are great because they are given permission to have fun and see their parents having fun too, as they can often see the stress they are under.
“These activities also provide stimulation for children with special needs in a safe space.
“They are challenged and families are put outside their comfort zone.
“They get to do things some families take for granted, such as a visit to Blackpool Pleasure Beach, which we offer at a subsidised rate.
“The children get to have the same experiences their peers do, without the huge financial burden.”
Sarah and Nannette work hard to ensure there is enough funding to maintain its activities
Businessman Pete Marquis recently organised a charity ball, which raised more than £64,000 through auctions and donations.
Sarah, 43, adds: “We are absolutely blown away by the total. We are always conscious that now we have provided a service, we never want to pull it away from the parents, but this will give us two years security.
“We would like to thank Pete for believing in High Five. We’d also like to thank Carol Marquis-Grime, Dave Mcmonagle and Chelsea Dee for the enormous amount of hard work that went into organising the event and everyone who donated prizes, attended the ball and gave so very generously.”
For more information on High 5, visit www.high5lancashire.com