WellChild - Helping sick children and their families across the UK

Family Stories

Children, young people and families are at the heart of WellChild's work - here are some of their stories.

Rhiannon's story

Rhiannon while she was in hospital Once, Rhiannon’s family life revolved around the hospital ward where she spent months on end. The 12 year old suffers from a rare genetic condition which causes her great pain and serious problems with her muscles and bones.

Rhiannon developed like other little girls until the age of five when her mum Debbie started to notice that she walked with an unusual gait. After many tests the family was told that she had all the symptoms of Schwartz Jampel syndrome - a rare genetic condition that causes muscle weakness and affects the neurological system with symptoms such as reduced dexterity, and serious problems with speech, eating and swallowing.

There is no treatment for Rhiannon’s condition – only pain control. Her mobility has gradually got worse so now she uses a wheelchair. She was admitted to the University Hospital of Wales, Cardiff in July 2009 for a serious operation on her legs to try to help her mobility. She thought she would be in hospital for just three days but her condition became so painful she could not be discharged. More than six months later she was still in a hospital ward.

Mum Debbie and Rhiannon’s sister Angharad had to leave the family home in Caerphilly and move into accommodation in the hospital so they could be near her. But what Debbie really yearned for was for all of them to be home again with Rhiannon getting the care she needed and a proper family life.

“Getting home would give back Rhiannon her life,” said Debbie.

Thankfully WellChild Nurse Rhian has provided a light at the end of the tunnel for the family. Because of her, Rhiannon is now home with her family, with the right support.

She now attends school with the help of her motorised wheelchair. She regularly goes to the cinema and has friends to stay over, often playing on the computer and watching TV.

“Rhian has done an amazing job,” said Debbie. “It is wonderful to have somebody who is there to get us home with everything in place so we can have peace of mind and not end up straight back in hospital again. Rhian is an amazing personality – so calming.”

With WellChild’s help Rhiannon and family now have hope for the future.

Ethan's story

Catherine and Kirstie's story