3 September 2026
“From that moment, everything changed”: Rose’s story of care, family, and Noah’s Ark Children’s Hospice
When Rose first received a phone call about a children’s hospice back in 2008, she admits her understanding of what it meant was shaped by fear and misconception. “I remember thinking, I’m not ready for a hospice,” she says. “My perception of a hospice was obviously end of life.”
At the time, Rose was caring for her grandson Ben, and soon after, his sister Sophie. What she didn’t yet realise was how profoundly Noah's Ark Children's Hospice would become part of their lives, not as a place of endings, but as a source of support, therapy, joy, and belonging. Today, Rose is Sophie’s primary carer. Sophie is now 20 and lives with a life-shortening genetic condition known as STXBP1 disorder. The same condition affected her brother Ben, who sadly died in 2014 at aged 17. Despite immense loss and ongoing challenges, Rose speaks about the difference Noah’s Ark has made with clarity: “It became about life, not about end of life.”
A diagnosis that changed everything
Ben began having seizures at just a few weeks old. At first, there was no clear diagnosis, only uncertainty and escalating medical concerns. “That’s when the ground fell from beneath us,” Rose recalls. “It’s just not what you expect at all.” Sophie’s diagnosis came later. Initially appearing healthy, she too began experiencing seizures at around six months old. For Rose, this second diagnosis brought a deeper emotional impact. “I think that’s when the devastation was absolutely complete,” she says.
Both children were later diagnosed with STXBP1 disorder, a rare genetic condition that affects brain development and leads to complex neurological and physical needs. Their symptoms included uncontrolled epilepsy, dystonia, profound global developmental delay, and a loss of speech and mobility over time. Both children required full-time care, feeding via gastrostomy tubes, and wheelchair support.
Rose describes life during those years as constant uncertainty. “You’re always on the back foot,” she says. “Dashing to hospital, adjusting medications, trying to prepare for what the next day might bring.”
Two very different children, one deep bond
Despite their shared condition, Ben and Sophie had distinct personalities. “Such different little characters,” Rose says fondly. Ben, she describes, was gentle and deeply affectionate. “He used to come up behind you and put his finger through the loop of your jeans to guide you where he wanted to go. He had no speech, but he was just so gentle, so joyful.”
Sophie, in contrast, was “unstoppable” as a child; mischievous, energetic, and full of personality. She adored her brother. “They had a great relationship,” Rose says. “But very different personalities.”
Rose’s connection with both children deepened further when she became their primary carer. Ben came to live with her at age three, and Sophie followed as a baby. “I consider myself very lucky,” she reflects. “Not many grandparents get the opportunity to be so close to their grandchildren.”
Discovering Noah’s Ark: from uncertainty to understanding
When Rose first learned about Noah’s Ark, she was invited to discuss what a children’s hospice could offer. “I can remember thinking, I’m not ready for hospice,” she says. “But I said yes anyway.” What she discovered challenged every assumption she had. At the time, Noah's Ark Children's Hospice did not yet have a dedicated building. Instead, it operated as an outreach service. A Play Specialist visited weekly with sensory toys and activities tailored to Ben and Sophie’s needs. “One of the ladies used to bring new sensory toys every week,” Rose says. “And it meant I could put the washing in, get a shower, just have a moment.”
The support extended beyond the children. Practical help with daily tasks, emotional support, and flexible short breaks (respite care) made an immediate difference. “It changed my perception completely,” she says. “It became about life.”
A hospice built for life, not just care
As the years went on, Noah’s Ark developed into a purpose-built children’s hospice offering specialist facilities including sensory rooms, hydrotherapy pool, creative therapies, and soft play spaces.
For Rose, the opening of the building was emotional. “It still makes me emotional,” she says. “It meant Sophie could be Sophie.” The difference between having support at home and accessing a dedicated hospice environment was profound. Rose explains that for children with complex needs, safe and accessible spaces are rare. “There isn’t another environment where we can take Sophie safely where she can be out of her wheelchair.”
At the hospice, Sophie can experience therapies designed to stimulate, relax, and reconnect her with lost abilities. Hydrotherapy, in particular, has been powerful. “She used to be like a little fish in water,” Rose says. “And in hydrotherapy here, you could see her move her fingers, feel the bubbles, it gave us glimpses of who she is.”
Music therapy also provides rare moments of expression and joy. “She would bang the piano or kick a drum and enjoy the response,” Rose says. “It’s like they unlock something inside her.”
Life after loss, and ongoing support
When Ben died in 2014, Rose describes the experience as both devastating and calm. “He died at home, just Sophie and I with him,” she says. “It wasn’t dramatic. He just slipped away.” What was more difficult, she recalls, was Sophie’s reaction. “She just howled. She knew he was gone. She went to his room and stood at the door, confused.” During that time, the support from Noah’s Ark’s family groups became essential. “To know there are people who understand what you’re going through, that was invaluable,” she says. “Especially in the darkest times.”
A community built around families
Over the years, Noah’s Ark has become more than a service, it has become a community. Rose describes the staff as “a family,” from reception to nursing staff, therapists, and Family Link workers. “There’s always something going on,” she says. “Events, groups, activities for everyone.” This sense of belonging extends to other families too. Even when time passes between visits, shared experience creates lasting bonds. “You meet again and you have that connection,” she says. “Because it’s a place that understands your life.”
Looking ahead:
Sophie turns 20
Sophie is now approaching a major milestone, her 20th birthday. While Sophie’s condition continues to progress, Rose is clear about the importance of ongoing support. “Noah’s Ark will support her until she’s 25 if we make it that far,” she says. For Rose, that continuity is vital. “Things are becoming more difficult. So, support like this is more important than ever.”
Why support matters
Rose is also clear about the importance of public support for children’s hospices. “To anyone thinking of donating to the From That Moment campaign,” she says, “your contribution would be absolutely vital.” She explains that running services like Noah’s Ark costs over £7m each year, with 76% of the funding coming from donations. “The gift you’re giving is invaluable,” she adds. “There is nowhere else that offers what Noah’s Ark offers. It gives children the chance to just be children.”
Reflecting on her journey, Rose returns to a simple truth: the importance of joy in the midst of complexity. “Noah’s Ark gives children like Sophie the best possible moments they can have,” she says. “It gives them the chance to just be children.” For Rose, that is what matters most. “Without it, life would be so much more isolated,” she says. “Noah’s Ark gives us community, support, and moments of happiness in a very difficult life.”
Sophie and Ben’s story is a powerful reminder that in an instant, everything can change. Through our From That Moment campaign, we're standing alongside families when they need us most, but we can't do it without you.
Join the campaign today. Donate, fundraise or lend your support to help ensure more families receive the expert care and compassionate support they deserve. Visit the From that Moment page on our website to find out how you can make a life-changing difference.
