Tavistock Muscular Dystrophy Group

A branch of the national Muscular Dystrophy Group was set up in Tavistock in the late 1960s to help young people with MD and has been organising a respite holiday every year for over 40 years.

There are more than 60 types of neuromuscular disorders classed as muscular dystrophies (MD), and although they affect only one in every 1000 people, these progressive muscle-wasting conditions lead to an increasing level of disability and often a shortened life-expectancy. Duchenne MD is one of the most common forms caused by a genetic condition, usually affecting boys; difficulty with walking is noticed in the early years and results in the child having to use a wheelchair before their early teens, with life-expectancy varying between the late teens and early thirties.

Tavistock resident, the late George Draper, was particularly influential in setting up Tavistock Muscular Dystrophy Group and the idea of a yearly holiday came about through his connection with Frank Cornish. When Frank had met a disabled boy and discovered he had never been away from home on holiday, he had invited the boy to stay with him and his wife Peggy on their farm at Coads Green, then the following year the boy had asked if he could bring a friend. Following this, the first Tavistock Muscular Dystrophy Group respite holiday was organised in the village hall at Coads Green, it is thought in 1973.  It was a resounding success, with local villagers giving up their time to help out, as well as donating food and drink. Demand for places increased year on year and so by 1977 a larger venue was found at the Molly Owen Centre in Tavistock. For two weeks every summer the centre was transformed with beds brought in from Stonehouse Royal Naval Hospital; four naval nurses came to care for the children, while a party of volunteers gathered from the Tavistock area to provide daytime care and entertainment, taking the children on trips to the zoo and adventure parks, along with local activities.

David Dodd and Alison Carreck were two volunteers who joined the group in its early days and have been involved with the annual holiday ever since. They have seen many changes of venue for the holiday in that time, due to the changing needs of the group, as well as new requirements which have been introduced over the years. In the 1970s life-expectancy for children with MD was only in the mid-teens, and so the holidays catered for relatively young children, whereas now the group caters for more young adults over the age of 18.  Once they leave school, life can become very isolated and there are very few opportunities for respite care in this age group. 

Treloar College in Hampshire is this year’s holiday destination for 12 young people with MD from Devon and Cornwall, plus 24 volunteer carers. It is one of only three venues in the south of the UK offering enough rooms with fully adapted facilities for disabled use, plus sufficient space for carers. The annual holiday is a highlight in the lives of the young people with MD who regularly attend, providing a rare opportunity for them to mix with other people of their own age with the same needs and concerns. Many of the young people require breathing apparatus, so physical pursuits are limited. However, a variety of activities such as cinema, shopping, boccia, board games and fancy-dress parties, mixed with day trips to nearby places of interest, all contribute to a week of intensive fun which is invaluable for the guests. Long-lasting friendships frequently develop and the advent of social media has enabled the young people to maintain close links until the next time they see each other.

An extremely loyal group of carers join David and Alison every year; some of them started helping as students and have gone on to careers in health and medicine, but there are also volunteers from many other walks of life, drawn together by strong ties of friendship for the young people and their fellow carers – the close ties have even resulted in four marriages among the volunteers! The week’s respite care also allows the families of the young people a chance to concentrate on other siblings or take a break themselves.

Local fundraising and donations received throughout the year cover the £15,000 yearly cost of the respite holiday, as well as the annual New Year party in Tavistock which provides a chance for local people with MD and their families to meet up with carers and fundraisers. Every June the group also organises a collection on behalf of Muscular Dystrophy UK, which supports families living with muscle-wasting conditions, as well as funding research into finding an effective treatment. David and Alison would like to thank the people of the Tavistock area for giving such wonderful support to the group for so many years.

Rosemary Best

If you would like to know more about Tavistock Muscular Dystrophy Group, or could help with fundraising, please contact Alison Carreck on steve.ali@care4free.net or 01822 810868, or David Dodd on 01822 810776. You can also donate online at www.musculardystrophyuk.org

Tavistock Muscular Dystrophy Group will be collecting at Morrisons on certain days in June, as well as:

Flag Day in Tavistock - Saturday 23 June

House-to-house collection - Saturday 9 to Saturday 23 June