"It felt like our whole house was on fire and Julia’s House came and extinguished the flames."
Ellie's family are sharing their story this Children’s Hospice Week (16-22 June) to raise awareness and vital donations for Julia's House.
A shock diagnosis
Ellie seemed like a healthy baby at first, but then at nine months old she slowed down and stopped crawling.
Mum Beth says, “That was when we first started to think something might be wrong.”
Genetic testing showed that Ellie has a rare degenerative muscle-wasting condition called Spinal Muscular Atrophy (SMA) Type 2. The condition is life-limiting and life-shortening, affecting muscles progressively from the spine outwards and affecting swallowing and breathing.
“The shock period was absolutely awful,” says Beth, from Salisbury. “I was searching for a cure anywhere I could. We were just desperate – we were like frightened children.”
While she is still able to use her lower arms and hands to write and draw, the muscles in Ellie’s upper thighs have now become too weak for her to stand independently or walk.
“She dreams that she’s not in a wheelchair. She dreams that she can run,” says Beth. “It’s so hard, you can imagine.”
Watch Ellie's story in our special video >>
'Her mental health is massively affected’
“While she does physically struggle, on a day-to-day, it’s Ellie’s confidence and sense of identity that’s damaged the most,” says 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.
“In 2023, Ellie took to her bed on and off for about six months. She was saying she didn’t want to live, she dropped out of school, and she stopped eating. 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,” says Beth.
“It felt like our whole house was on fire and Julia’s House came and extinguished the flames. I could cry on Nurse Elaine’s shoulder, and she was there to reassure me, and all the Julia’s House nurses and Play Worker and counsellor were helping Ellie through her very fragile mental health condition.
“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.”
Beth says, “They looked after Ellie and we’d see her smile. The Sibling Worker looked after our other nine-year-old daughter Florence and we’d see her smile. And for me, being around other mums has been so great. There are lots of mums like me who are keeping on going and staying positive and they’re very inspiring for me.
“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.”
Children’s hospices are ‘gift of hope’
Julia’s House children’s hospice provides specialist care for children with life-limiting conditions and support for their exhausted families, giving them all a chance to have the magical moments and memories every child and family deserves.
“It’s a very raw life, having a child like Ellie,” says Beth. “Being part of Julia's House is like belonging to a family where you don’t need to explain how tough things are. Everyone knows and everyone is trying to help you in that circle.”
Like so many children’s hospices, the care that Julia’s House provides is under threat. The charity is struggling to meet its rising demand and £5.1m cost of care and is this year facing a £1m budget deficit. Julia’s House currently receives just 8% ongoing Government funding and must raise the remaining 92% of funds through donations and its charity shops.
Martin Edwards, Chief Executive for Julia’s House, says, “The recent announcement of additional Government funding of £100 million for hospice capital projects over two years is very much welcomed. However, this is a stop gap rather than a sustainable solution to hospice funding, particularly as it can’t be used to pay the salaries of skilled and compassionate nurses and carers.
“We’re a vital service for local children and families, and relieving pressure on the NHS, and we're hoping our critical role will be reflected in the Government's upcoming 10 year health plan as well as the continuation of the Children's Hospice Grant beyond 2026.
“We’re hugely grateful to our community and supporters who are the people that have kept us caring over the past 20 years. But we need a long-term solution to hospice funding, so families don't have to face a postcode lottery on whether they can access respite and end of life care for their child. We want to continue to be the constant comfort for these families amidst such heartache and uncertainty – there is no-one else to provide this support.”
Beth says, “If there aren't charities like Julia’s House supporting families like us – that for me would be a very bleak future. It's just imperative that we have this support system for families, and for children like Ellie and Florence. It’s the gift of hope, isn’t it?”
Every child deserves a childhood
Julia’s House Nurse, Elaine Wilson says, “When we first met Ellie, she was very quiet and very well mannered. That remains the same, however, Ellie has definitely grown in confidence. She's very creative, she loves painting and making things, and she loves to outsmart us at board games! She’s very kind and caring, and she’s brilliant with the other children at Julia’s House too.”
Elaine says, “The children that we provide care for at Julia’s House all come with their own individual needs. And they very clearly make it known, through whatever communication that they use, what they want from a given day.
“Childhood is precious and fleeting, especially for those in hospice care. We help the children we look after just enjoy being children, while their families know they are in a safe place with the very best clinical care, love and attention.
“We also provide end of life care for families in our hospices and in the family’s home, and that is the hard bit,” says Elaine. “It's not easy. But if you can give a family a dignified death for their special child, that's really important. And we only get one chance to do that.”
Giving parents a choice
Beth says, “At Julia's House, there is an end-of-life suite at the hospice. And we've talked to Nurse Elaine about what we would want to do, and how we would like to be supported, were Ellie's condition to suddenly deteriorate.
“I know just from the time that Ellie's been at home in bed poorly that I wouldn't want to nurse Ellie at home in that situation. Because I just feel very vulnerable and frightened that I’d need to be good medically.
“And I can imagine at that time, all I would want to do is just be a mum, and Norberto would just want to be a dad, and Florence would just want to be a sister, and we wouldn't want to worry about anything else.
“And I think that's what Julia's House would offer us, if anything like that were to happen – that we would have a safe place to go, that we could concentrate on being a loving family and not on the medical elements.
"I just can't imagine going through that without Julia's House. It's just too terrifying and it's too devastating. You just want to be around an extended professional family that shows you love and compassion. That's all you want, and that's what Julia's House does.”
This Children’s Hospice Week, Julia’s House is encouraging schools, community groups and workplaces to host a Big Teddy Takeover to raise funds for the care of local families.
Find out more about Julia's House children’s hospice and how you can help families like Ellie’s at www.juliashouse.org/CHW25
