By May 2015, Lily had her first seizure, and life changed overnight. From then until 2021, seizures dominated the family’s life. They were in and out of hospital all the time with Lily’s prolonged seizures, being rushed into resus, being admitted onto the children’s ward, going home and then it would happen all over again.
After years of uncertainty and countless failed treatments, in January 2021, Lily was finally diagnosed with Lennox-Gastaut Syndrome, a rare, severe form of epilepsy. Although scary, that was the turning point for our family. Lily got access to some different treatments, and it changed everything – it’s calmed her brain down a lot. This has brought a huge sense of relief to the family, allowing them to focus more on Lily’s development and well-being rather than being in constant crisis mode.
Lily attends for short break stays
But Lily’s condition remains complex. She is non-verbal, has profound learning difficulties, and scoliosis, which will require surgery. Scoliosis is a condition where the spine curves sideways, often in an ‘S’ or ‘C’ shape. For children like Lily, it can cause pain, limited mobility, and breathing difficulties, especially as it progresses. The need for surgery adds another layer of challenge, both physically and emotionally, for Lily and her family, so the journey is far from over. Still, through it all, “Lily is a resilient, sassy little girl who isn’t afraid to throw a perfectly timed side eye to let you know exactly what she thinks.” Claire lovingly shares.
A Sibling’s Journey
In 2019, Lily’s younger brother, Noah, was born. He has only ever known a world of ambulances, hospital stays, and emergency interventions. “I distinctly remember a time when he was in his little bouncer while Lily was stretched out on the living room floor and the paramedics were doing what they needed to do,” says Mum. He just takes it all in his stride as it’s all he’s ever known. Their bond is extremely tight and if she’s in hospital, he needs to go and see her, wants to FaceTime her and gets upset if he can’t.
At the same time, he’s had moments of heartbreak, asking, “Do you love Lily more than me?” As their mummy, that broke me, I had to explain that Lily just needs more help that’s all. Hearing that question from him was incredibly painful to hear—it showed how much he’s quietly carrying, and 2 how hard it is for such a young child to make sense of it all. It’s a constant emotional balancing act, trying to meet both their needs when the circumstances are so unequal.
That’s why Keech is so important for both of them. “At Keech they can be together and do things that normal siblings do, without fear or judgement and as a parent, that is priceless’’
“As a parent of a child with complex needs and a healthy child, the pressure of trying to get that balance right, so both children feel equally loved and included is hard. Keech has taken some of that pressure and strain off me. I can concentrate on being mummy to both children, knowing they are safe supported and happy.”
Finding Keech: A Turning Point
In early 2023, after a particularly bad hospital admission, a nurse mentioned Keech. She said, ‘Do you go to Keech?’ and Claire replied, ‘No, because Lily’s not dying, she doesn’t need a hospice’
“How wrong I was to have that assumption about hospice care, I can honestly say that the conversation that followed changed our lives forever.”
Claire immediately self referred Lily on the Keech.org.uk website, and within a week, Keech nurses Jay and Laura visited the family at home. “Since then, Keech has been a lifesaver. The misconception of what a hospice is, I get it, it freaks people out. But Keech is not about dying; it’s about living.”
The Impact on the Whole Family
Keech has become a place of healing, respite, and joy—not just for Lily, but for Noah and Mum and Dad, too.
“I can bring both children here on my own and not worry. If Lily has a seizure, I know she’s in the best hands, and Noah can still enjoy his time.”
“Lily comes in for the day on the children’s unit, swims in the warm hydrotherapy pool, enjoys having pamper sessions, and listens to her favourite, ABBA’s ‘Dancing Queen’ on repeat.”
“At Keech, we offer families a space to feel held and supported. Parents are free to focus on being parents, siblings can enjoy simply being children, and for a little while, life is about more than just illness.” —Laura, Children’s Palliative Care Clinical Nurse Specialist
“It’s somewhere she can just be free. Safe. Happy. Watched over by people who get it” says Claire.
Noah now attends sibling support groups and family activity days. “He just plays with the other children like it’s normal, because this is our normal.”
Claire also attends art therapy sessions, which have helped her take time to reflect and make sense of her thoughts and feelings “It’s time to be me, not just Lily’s mum or Noah’s mum. And that’s really important, Keech has given me that chance.”
When the family went away recently, the Keech team went above and beyond liaising with the local hospital near their holiday destination to ensure Lily would have access to care if needed. “It’s that kind of support that just takes the weight off,” Claire says. “I didn’t even ask, they just did it.”
The True Value of Community Care
When Lily was intubated again this year, Keech staff were by the family’s side throughout. Jay and Lisa stayed with me the whole time in hospital. I also know I can text them any time and they’re there for us. To us, they feel like an extension of our family.
“Keech doesn’t just care for Lily, they care for us all. There’s no judgement. Just love, support, and kindness. I wish we’d found Keech sooner.”
“When a child is diagnosed with a life-threatening condition, it’s not only the child who needs care, it’s the whole family. Part of my role is to be a steady presence, helping them make sense of the unknown, ensuring they feel supported, heard, and never left to face it alone.” —Lisa, Children’s Palliative Care Clinical Nurse Specialist.
Even something as simple as a family photo at Christmas, free from medical equipment, bibs, and tubes became a treasured memory. “It probably sounds silly, but we’d never had a proper photo of the four of us until that moment.”
A Message to supporters
To anyone considering supporting Keech, Claire, Lily’s mum is clear:
“Even the smallest donation changes lives, ours did. I don’t know how we’d have coped without Keech, but I do know it would have been a lot harder. I just wish we’d found Keech sooner.”
And to any family unsure about taking the first step:
“Please don’t wait like we did. Come in with an open mind. It’s not what you think, it’s so much more. It’s not about dying. It’s about living well, together, as a family.”
70% of our funding comes from people like you and so this Christmas help us wrap a family like Lily’s in care, not just for the festive season, but for every moment that matters.