Simon and Helen’s daughter Ruby-Mae has severe complex needs. They say without Noah’s Ark Children’s Hospice, which faces rising costs, that life would be ‘apocalyptic’.
In 2023, Simon Morley and his partner Helen Bolger heard the words no parent wants to hear.
“It was a scary moment when one of Ruby’s epilepsy consultants told us, ‘your daughter would benefit from the children’s hospice’,” Simon, 46, says. “But from the moment we walked through that door at Noah’s Ark, it was such positivity and professionalism – it was an amazing set-up. We are part of the furniture now.”
Simon and Helen’s seven-year-old daughter Ruby-Mae was diagnosed with Rett syndrome, a rare genetic neurological and developmental disorder, at the age of two-and-a-half. She has severe complex needs, uses a wheelchair and needs an eye-gaze device to communicate, as she is non-verbal. For her family, life would now be unthinkable without the hospice.
“Boy, has this hospice changed all our lives,” Simon, who has put his micro-brewery business on pause to become Ruby’s primary carer. “Noah’s Ark is like the oxygen mask on a plane, it helps us to then help Ruby. It is wrap-around care for the whole family. Ruby absolutely loves it. Without The Ark being there, her life would be so diminished, she would not be the happy girl she is. Our lives would be apocalyptic without Noah’s Ark.”
Noah’s Ark Children’s Hospice has been caring for children since 2006 but this year found itself facing severe financial challenges as an unintended consequence of National Insurance rises introduced by the Treasury. There are over 50 children’s hospices and 200 adult hospices in the UK, providing palliative care and end-of-life support to over 300,000 people a year.
“The NI increase is expected to cost Noah’s Ark approximately £100,000 per year” says CEO, Sophie Andrews OBE. “Despite this, we are committed to continuing our care for children with life-limiting and life-threatening conditions.” Noah’s Ark Children’s Hospice says that no services are being immediately impacted. “However, this unbudgeted cost places additional strain on our ability to grow and scale our services to reach more babies, children, and young people, and their families.”
In 2024/25 it cost £7.1million to run the hospice – which provides paediatric palliative care via specialist nurses and carers, creative therapies, a specialist play team, and a Holiday Lodge in Mersea Island, Essex – services which already rely heavily on voluntary income.
Katie and Tom Morsbach’s daughter Leia is six-years-old. A big sister to brothers Robin and Dylan, Leia has mitochondrial disease and severe epilepsy. Katie and Tom are opera singers. Tom donated one of his kidneys to Leia.
In 2019, the Great Ormond Street Palliative Care Team referred the family to Noah’s Ark Children’s Hospice. “The MRI came back at GOSH, and it was pretty bad.” Katie, 37, says. “The palliative care team was in the room with us pretty much straight away, and we were handed leaflets for the hospice. It’s a grieving process. You have all these hopes and dreams for your children and in one fell swoop it goes out of the window.
“Leia is amazing, she’s always smiling, she loves life. She has been through a lot – she’s had dozens of operations and spent months at a time in hospital. She has taught us to value things in life and to make the most of the present day. We were told she had just months to live but she’s beaten all expectations.
“In the beginning we felt isolated, it was just awful, I couldn’t even talk to my best friend or family because they didn’t understand. My issues were different to other first-time mums, so chatting to parents at the hospice is a relief, it’s good for your mental health. Sometimes you feel like you’re going crazy, but you’re not, you’re just dealing with things that are really difficult. We have a hospice family link worker, who I can call up for a chat.”
Katie, who runs a singing and drama school, adds: “When we first heard the word, ‘hospice’, it sounded horrible, but when Leia attended her first music therapy session, it felt so positive – it isn’t what I imagined a hospice to be. Noah’s Ark supports my whole family. It is not a luxury, the hospice is a lifeline, they’ve helped us in good and difficult times. I think people are shocked when they hear it costs something like £18k a day to run, but if you think about the breadth of services they run, not just at the hospice, but in homes too.
“I’ve made lots of friends, we attend mum’s evening, dad night’s out, my boys have made friends with other siblings. If I’m totally honest, Noah’s Ark is the most important place with the most important people for us. We moved house to be closer. They give us the opportunity to create amazing memories. I’ve been able to leave Leia there, when I gave birth to the boys, because they can provide the specialist care Leia needs. A good few times a year, we use their respite service.”
Ruby’s dad Simon says he and his partner Helen, 44, a commissioner for health and social care services in London, can’t imagine life without Noah’s Ark Children’s Hospice. “Due to Ruby’s severe complex needs, we’re really limited on what we can do,” he says. “So, we spend a lot of time here, she absolutely loves it.
“They have an amazing playground that allows you to wheel the wheelchairs onto the swing, they host events, there is a play team and soft play. One of Ruby’s highlights was playing on the trampoline with an Arsenal player, and she’s played a bit of football with Tottenham Hotspur’s women’s team. Noah’s Ark has a huge bank of great volunteers who come into the home, it allows me to wash up, put the laundry on and cook. The only time we feel safe leaving Ruby is with Noah’s Ark or at school.”
A government spokesperson said: “The government recognises the incredible work that children and young people’s hospices do across the country. We are investing £100 million to improve hospices’ facilities and a further £26 million specifically for children’s hospices this year, the biggest investment in hospices in a generation. We are also working to make sure the palliative and end of life care sector is sustainable in the long term. The decision to increase employer National Insurance contributions allowed us to increase investment in health and care by £26 billion this year.”
Helen says the hospice is invaluable. “We use the respite service, Ruby loves it, and for us that two-day weekend is so valuable, it allows us to be us and not carers. We spent 24 hours just sleeping and recovering, we can enjoy a meal out or the cinema and feel normal. Without the hospice we would be a wreck, and miserable.”
She adds: “Ruby is such a happy, sociable little girl, who loves joking around. Her care is exhausting, there is no let-up, but her smile makes it all worth-while. Before Noah’s Ark, all we could see was a negative future. Now we’re happy again, we smile.”
For more information visit Noah’s Ark Children’s Hospice.