Seven-year-old Abbi Bennett lives with her parents Sarah and Gary in Bournville, Birmingham, and three sisters Ashleigh (15), Amber (9) and Ava (4).
“She is funny, she’s passionate, she’s caring, and she’s just a joy to be around. She gets on really well with her sisters, who love her to bits. They support her as best they can – but equally, she will do the same for them if she can,” says dad, Gary.
Abbi was born with Ullrich congenital muscular dystrophy. Fewer than 100 people in the UK are thought to have the condition, which causes muscles to weaken and waste over time, and leads to increasing disability. Neither Sarah nor Gary had heard of muscular dystrophy when their daughter was diagnosed. Like many parents, they wish that more support had been available to them at the time.
“We want to make sure support is there for other parents. If it wasn’t for getting in contact with Muscular Dystrophy UK and meeting other families, I don’t know what we would have done. We have gained so much support and strength through connecting with the charity. I can’t emphasise enough how pivotal that was in terms of us feeling less isolated,” says Gary.
Abbi can walk, but she needs help from her parents with basic things, like getting out of her bed in the morning, brushing her teeth, opening a packet of biscuits or getting up from the floor if she falls down. As Abbi grows and the pressure on her muscles increases, she will need to use her wheelchair more often. She could also be at risk of dangerous breathing difficulties – Ullrich congenital muscular dystrophy can affect vital respiratory muscles.
Mum Sarah says: “I try really hard not to think about the future, but it’s almost impossible. We’ve got four girls, so we are always thinking about the choices they are making and what they are going to do next, as they grow up. It’s so hard with Abbi, because we just don’t know what the future holds. It sometimes feels like a ticking time-bomb.”
Muscular Dystrophy UK is funding groundbreaking research to see whether a technique pioneered by the charity to treat Duchenne muscular dystrophy could be adapted for Abbi’s condition. It is hoped the technique, called exon skipping, might help to reduce – or even stall – symptoms for people living with Ullrich congenital muscular dystrophy. It is vital that funding is available for this research to continue.
Speaking about the need for research, Sarah says: “Research is a race against time for our kids. Kids with muscle-wasting conditions don’t have ten or 15 years to wait for a treatment. Every day that goes by is as important as the last. We need this to happen now.”
Please tune in to the BBC Lifeline appeal, BBC One, at 4:45pm* on Sunday 22 March to hear the Bennetts tell their story.
If someone in your family has recently been diagnosed with a muscle-wasting condition, please contact our Information and Support Team on 0800 652 6352 (Freephone).
*Timings and details may be subject to change, particularly in Wales, Scotland and Northern Ireland, so please check our website for updates.