The Jennifer Trust
Because SMA is so rare, hospital and social services staff often have very limited experience
National Lottery Awards - The Jennifer Trust's Spinal Muscular Atrophy Outreach Service, UK-wide is one of 10 Lottery-funded projects in the Best Health Project category of this year's National Lottery Awards, in association with FemaleFirst.co.uk
Finding out that your child has been born with Spinal Muscular Atrophy (SMA) is "one of the most horrific things that can happen to a parent," says Liz Willetts, director of support services at The Jennifer Trust.
The condition blocks the links between muscles and the brain, causing muscles to waste away. Babies with Type I, the severest form, may only live for weeks or months. Children with Type II often reach early adulthood, but are generally unable to stand or sit up without help, and are very susceptible to chest infections.
Coping with the condition is particularly difficult due to the short time scales involved, and also because it can be hard to diagnose. "Because SMA is so rare, hospital and social services staff often have very limited experience," says Liz. The Jennifer Trust is addressing that gap by using a Lottery grant to fund two outreach workers, who provide support for families of children newly diagnosed with Type I and II SMA across the whole of the UK.
The outreach workers are able to offer a rapid response - which local clinics are often unable to provide. This can be very important at a time when parents can feel very isolated, Liz says. The workers visit families in their own homes to give practical information and advice about coping on a daily basis, and share things other families have found useful. This includes loaning out specially designed toys for babies with weak muscles, advice about welfare support, hospice care and special equipment. They also provide support for younger family members.
Parents are encouraged to take an active role in their child’s care, and outreach workers help them discuss the care programme with health professionals. They also support and train healthcare staff, like nurses, health visitors and occupational therapists who may not otherwise be aware of up-to-date information about the condition.
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