Jenny King set up the Cotswold Downs Syndrome support group in memory of her daughter, Daniella, who died before her fourth birthday.
When Daniella was born there was no group available to people in Cheltenham and the Cotswolds. Jenny says, “You are a bit shell-shocked when you’re first told you have a child with Downs Syndrome. You don’t really know what the future will bring, and it’s helpful to meet other parents in a similar situation. Parents realise the potential their children have. They realise there is light at the end of the tunnel and that they can grow to have a fulfilling life”.
The group had eight members when it was set up in 2004 but now supports 38 families in the area, with regular social and fundraising events. Parents are able to meet and learn from each other because they are experiencing the same thing. “It’s knowing that you’re not out there on your own. It’s just bouncing ideas off each other, and knowing where to go for information”.
A siblings group is valuable for its peer support and understanding to the other children in a family.
The group raises about £1,000 per year to fund its social activities and is hoping to raise £18,000 for members to go on holiday next year. The trip would be to a facility on Exmoor run by the Calvert Trust which enables people with disabilities, together with their families and friends, to take part in outdoor adventure activities. Charitable status has been applied for, and to achieve this they need to show that they have raised, or have monies pledged for £5,000. “As a charity we will be aiming to expand our support for children with Downs Syndrome, working alongside the relevant services to provide appropriate support for them”.
If anyone would like to make a donation beyond our collections in church, cheques should be made payable to ‘The Cotswold Downs Group’ and sent c/o Jenny King, 1 Rowan Way, Up Hatherley, GL51 3YF.