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Housing Day 2014

Staffordshire grandmother helps families of disabled children

When doctors told Elizabeth Swingwood that they didn’t have a diagnosis for her severely disabled granddaughter Charlotte’s health issues, it would have been easy for her to become angry and disheartened.

But this remarkable Staffordshire woman turned a negative into a positive, and despair into hope, by creating a support group for families in the same situation as hers. Elizabeth, who lives in a South Staffordshire Housing Association (SSHA) property in Staffordshire, set up Syndromes Without A Name (SWAN), to help the families of the 6,000 children born each year in Britain whose disabilities have no known cause.

She explained: “As soon as Charlotte was born, we knew that something was wrong. She was blue and her features didn’t look right. She was having difficulty breathing and wouldn’t feed.” Weeks after her birth, Charlotte underwent surgery to repair a hole in her heart. Elizabeth continued: “We were warned that her development might be delayed because of the surgery but, at eight months, we were referred to an assessment unit where we discovered that she was visually and hearing impaired. She was registered as being deaf and blind. Gradually we came to terms with what was happening and realised that Charlotte was not going to develop like most children.”

Syndrome without a name

Charlotte was referred to a specialist children’s hospital after she began experiencing severe bouts of vomiting and symptoms of epilepsy. There the family were told they may never know what was causing her distressing spectrum of health and development issues. They also learned that there were many other families in the same position, caring for ill children without a diagnosis. “Our initial reaction was surprise,” Elizabeth remembers. “We thought that we were the only ones in this situation. There was also a frantic search for answers. It was a terrible shock because we had no guidelines as to what the future held for Charlotte – or even if she had a future.”

Supporting others

Without a diagnosis of a named condition, the family was unable to carry out its own research into Charlotte’s health and possible treatments. It was difficult to access benefits, support and special equipment for the same reason. Realising there were many families in a similar position, Elizabeth decided to create a support group. “I have spoken to many parents of undiagnosed children,” she said. “And the vast majority feel that they have been left to fend for themselves. If you have a diagnosis it isn’t a magic wand, but at least you have a map to guide you through the months and years ahead.” Soon after being set up by Elizabeth, SWAN had attracted members in 10 countries worldwide.

By the time she handed the reins over to the charity Genetic Alliance four years ago, 1,300 families had benefitted from the group’s support, advice and information. A spokesperson for SSHA, said: “Elizabeth is a remarkable woman and it is heart-warming to hear how she has used a distressing time in her family’s life to create a beacon of hope for other families in a similar situation. “On Housing Day 2014, it is more important than ever to celebrate the remarkable work of our tenants in their communities. We are proud to be Elizabeth’s landlord, and in awe of the fantastic work that SWAN does every year to help families in our country and abroad.”

If you are interested in supporting SWAN, you can find out more at www.undiagnosed.org.uk.

For more information on Housing Day go to www.housingday.co.uk