Alicia Tulley, has a son James (16) with Down’s syndrome. Here she tells us the story of the Wakefield and District Down’s Syndrome Support Group from a small group of parents to a registered charity almost 15 years later…

“Our group officially formed in 2000. Starting in 1999 with a small group of parents of children with Down’s Syndrome, including myself, meeting regularly at Portage coffee mornings in South Kirkby. We decided to start our own little group, meeting once a month at the local family centre.

We quickly realised how much we were helping each other. We passed on information that no one had informed us of, such as the benefits that would help us. We also got help from other services such as, Parent Partnership Service and found out about grants and funding. We even organised our own trip to Sundown.

As word spread through Portage, we got more families joining us. As our little group was growing, we became the Wakefield Branch of the Down’s Syndrome Association. We started to get more well known and our numbers increased. Our children were starting nursery, so we formed a Saturday Club, to be held in Wakefield. We had to change our Group’s name to become affiliated to the Down’s Syndrome Association and became the Wakefield and District Down’s Syndrome Support Group.

We had families now coming to us from the surrounding areas including Leeds, Dewsbury, Barnsley and Doncaster. We had contacts at the local hospitals and they promoted our group. We started to visit new families and produced a welcome pack. We organised more trips and applied for funding. A few of us became involved in the new Voluntary Sector forum. We became actively involved in improving support for families in the Wakefield area. We lobbied for Makaton training, early support, co-ordinated services, keyworkers and support with childcare.

As our children got older we identified gaps in provision for accessible sporting activities. We therefore applied for funding for a sports club which was open to all children with disabilities. We worked closely with the local authority and received funding for swimming sessions. It was also identified that a lot of information on Down’s syndrome in the libraries was outdated, so we applied for a grant to fund a library of resources and information which could be accessed through our own catalogue through Wakefield Libraries.

We carried on organising annual trips, holding Christmas parties and summer activities for families. We organised a training conference for parents and professionals and a further one working with the Wakefield Special Educational Needs Service. We funded specialist Down’s syndrome training for speech and language therapists in Wakefield, organised Makaton training for parents, working with Makaton tutors from the Pre-5 Service.

The group has grown so much over the years and we launched our first website at our 10th anniversary celebration event in 2010. Our Facebook site for parents has been a fantastic success and is a wonderful medium for new parents to link in and access instant support. The welcoming responses from other parents are both heart-warming and genuine. Parents know that if they have a worry or concern, there will be a flurry of helpful advice.

Our Family Fun Day, with the primary aim of raising more awareness of Down’s syndrome, has been one of our most recent successes and no one could have imagined its impact – over 3,000 people attended the last one and it gets bigger every year. We continue to acquire funding for more projects and new things happen all the time. Saturday club for our younger children has continued as it always has, and new families join our ‘family’ at almost every session. They often meet at Saturday club, join us at events and progress with us on to our activities for older kids and adults – friends for life!”