'Fragile' girl's life transformed after rare condition caused her to stop eating
A 'fragile' girl's life has been transformed thanks to "caring and loving" staff at a hospice.Ellie, 12, from Salisbury, Wiltshire, has a rare life-limiting muscle wasting condition called Spinal Muscular Atrophy (SMA), which prevents her from walking.Julia's House children's hospice came to the family's aid in 2023 after Ellie took to her bed, dropped out of school and expressed suicidal thoughts.Her mother Beth said: "They just came in and gave us a chance to heal a bit. Cope a bit. Relax a bit. We were given this 360 care and love from people that were so gentle with us when we were so damaged."
The family are sharing their story during Children's Hospice Week, which runs until Sunday, to raise awareness and funds for local hospices.Ellie's parents first noticed their daughter might be unwell when she stopped crawling at nine months old.Genetic testing showed that Ellie had SMA Type 2. The condition is life-limiting, affecting her muscles, swallowing and breathing.The period after the diagnosis was "absolutely awful", Beth said."I was searching for a cure anywhere I could. We were just desperate – we were like frightened children," she said.Ellie can still use her lower arms and hands to write, but is unable to stand independently or walk as her upper thigh muscles have weakened. "While she does physically struggle, it's Ellie's confidence and sense of identity that's damaged the most," said Beth. "She still very much cries because she can't go on a climbing frame and do things like other children. Her mental health is massively affected."
'Very fragile'
In 2023, Ellie took to her bed on and off for about six months. She stopped eating, dropped out of school and told her parents she did not want to live. "It was an incredibly scary time for us and for her."But that was luckily the year that we discovered Julia's House, and things changed massively."Being around other children who are in wheelchairs or know what it's like to have a complex condition has also been phenomenal for Ellie. She has developed some really special friendships because of Julia's House."She added that all of Julia's House nurses, play worker and counsellor helped Ellie through her "very fragile mental health condition".
'Enormous strain on parents'
Mike Bartlett, the charity's chief executive, said that Ellie's case proved how important it was to support parents, as well as children."Looking after a very poorly child puts an enormous strain on parenting. Research shows that many parents looking after seriously ill children suffer ill health themselves," he said.But it is becoming more difficult for the charity to provide its services, due to the economic climate, he added."The problem is the costs have gone up, the cost of providing care, staffing, energy bills, inflation all have a pressure on our bottom line and it's getting harder and harder to fundraise," he said.
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