Duchenne Family Support Group - Jeans for Genes

Duchenne Family Support Group

The charity Duchenne Family Support Group (DFSG) supports people with Duchenne Muscular Dystrophy and their families. They provide a free helpline, information, quarterly newsletters, days out and subsidised holidays. DFSG has received a grant from funds raised by Jeans for Genes to support their work.


Images taken on DFSG days out. The rights to these images are owned by DFSG.

The genetic condition Duchenne Muscular Dystrophy is a progressive and life-limiting muscular degenerative condition, estimated to affect one in 3,000 boys. Boys are likely to need to use a wheelchair by 8-11 years of age. Life expectancy is often early 20s. There is no cure, but good treatment can help slow the progression.

Phillippa Farrant, Development Officer for DFSG, says: “The charity started 35 years ago as a support group for parents who met up at clinical appointments and has grown from there. We now have 600 families in our network. We organise days out and subsidise holidays for groups of families, in Norfolk, the New Forest and Brittany, France. The accommodation is fully accessible, with profiling beds and accessible showers. It means mums and dads can make memories with their sons and other children.

“It is vital for those families. They build long lasting friendships and get advice and support on how to cope in situations such as hospital and school. Other friends don’t really understand, but in our group, we really get what that person is going through. As a charity we are there to support the families.”

One family that knows what living with Duchenne MD is like, is the Elliott family from Goring by Sea. Laura Elliott’s son Sam, 19, was diagnosed aged five after a school nurse spotted that he had ‘an awkward gait’.

As a result of Sam’s diagnosis Laura had genetic testing and was found to be a carrier. The condition is carried on the X chromosome, which means women who carry the altered gene are unaffected but have a 50% chance of passing it on to each son they have. Laura’s youngest son, Owen, then just a baby, also tested positive, with no symptoms at the time. Owen is now 15. Laura’s daughter Heather, 25, is not a carrier.

Laura, 43, a hospital patient administrator and secretary of the DFSG explains. “It affects all the muscles in the body and can even affect brothers differently. It tends to be the pelvis that goes first, then legs and arms and fine motor skills. Eventually it can lead onto breathing problems. We are very lucky with our boys. Owen has been on a clinical trial with the drug Ataluren and that has been extended. He is still on his feet, using a walker. He can still walk up the steps of his friend’s house. The medication wasn’t suitable for Sam as you had to be ambulant, and Sam has been using a wheelchair since the age of nine.”

Laura, who is married to Peter, 46, a builder, adds: “Sam started at Portsmouth University this year and is having a brilliant time studying creative computing. He lives in halls of residence and has 24-hour care as he uses a biPAP machine at night to help with his breathing, and he needs turning three to four times a night. His carers help with shopping, and they take him out. One carer is a few months younger than Sam, and they have become friends, which is nice. They go clubbing and Sam is enjoying the socialising and drinking. It was hard to see him go, but the fact that he is having such a good time and has settled in so well, makes me hugely proud. He wanted to do it and he is absolutely loving it, which is brilliant.

“Sam used to play powerchair football and is a Brighton season ticket holder. He goes to as many home games as he can. Although the life expectancy is better, there are still lads that don’t make it. Unfortunately, Sam has friends who have passed away from Duchenne. We always say a life lived well is better than a life lived not doing anything.”

Owen is quieter than his brother, more reserved and has some autistic traits. Owen attends a mainstream school, as did his brother, with an accessible unit, which has facilities such as a hydrotherapy pool.

“Owen says he has no intention of going to University,” Laura adds. “He likes to stay at home and play on the Xbox. He has a select group of friends, and he likes animals. We recently took him to the zoo, which he enjoyed and in April the Duchenne Family Support Group subsidised a trip to the Bovington Tank Museum and we met up with other members. The support you get from other people in the same boat is like gold dust.”

This year, families have enjoyed a trip to an accessible hotel in Manchester, with a tour of the Manchester City football stadium and a gaming session – all very popular with the boys!

“It is really important for families and siblings to get together so you feel you are not on your own,” Laura explains. “You feel so isolated when you have a diagnosis of Duchenne. You can ask your specialist, but on a day-to-day basis you often have to become the expert yourself. It can seem like it is all doom and gloom, but the charity promotes a positive outlook and there is a lot of stuff you can access and do with the boys. When you’re newly diagnosed you look for research and clinical trials, but as the boys get older your views change. You go through a process, and you want to make the most of life. That’s what we have tried to do.”