Latest news with #childrenshospice
BBC News
10 hours ago
- Health
- BBC News
'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 12, from Salisbury, Wiltshire, has a rare life-limiting muscle wasting condition called Spinal Muscular Atrophy (SMA), which prevents her from 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 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 parents first noticed their daughter might be unwell when she stopped crawling at nine months testing showed that Ellie had SMA Type 2. The condition is life-limiting, affecting her muscles, swallowing and 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 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 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.
BBC News
3 days ago
- Health
- BBC News
Peterborough mum discusses hospice care stigma in Asian community
A mother is hoping to challenge negative attitudes towards hospices, especially within the Asian community, by sharing details of her son's healthcare. Zak, who turns two in July, has Galloway-Mowat Syndrome and he and his family have been receiving care and support from East Anglia's Children's Hospices (EACH).Mum Farzana Kauser was "reluctant" and dad Asif Rehman "sceptical" about receiving its help, but now says "it can become a vitally important part of a family's journey".The family have yet to visit EACH's hospice in Milton, Cambridgeshire, and are instead receiving regular visits from the care team at home in Peterborough. Attitudes towards hospice care can be different in the Asian community, Ms Kauser explained."In India, where my parents are from, births and deaths are supposed to happen at home," she said."That attitude might make people reluctant to accept help from a children's hospice."While hospice care can be in a hospital, "a child's end-of-life care can be provided in a family's home", she added. Ms Kauser wondered if "given the multi-cultural city we live in, their resistance, or reluctance, might be heightened by a possible language barrier, especially if they're the first generation to migrate here from Asia".EACH supports children with life-threatening conditions, and their families, across Cambridgeshire, north Essex, Norfolk and Princess of Wales has been the hospice's royal patron since 2012. 'Creating memories' Zac, who is unable to sit independently and uses a special feeding tube, was just nine months old when he was diagnosed. The disorder also impacts his has three older siblings - Ruwaida, 15, Talha, 11, and Huzaifa, eight."One of the things that impressed me most was the support for our whole family, not just Zak," said Ms suspects more people would use the service if it was "more local... especially as some people might not drive and be able to get to Milton".Ms Kauser is also keen to raise awareness among people of all backgrounds about what hospice care can offer, "because no-one wants to talk about death"."It's not just about death and dying - instead, it can be a happy place where people enjoy spending time, creating memories, experiencing different things and meeting new people," she said. "Before EACH came along, I thought of hospice care in black and white, but now I see it in colour." Follow Peterborough news on BBC Sounds, Facebook, Instagram and X.
