Jude’s Story – How Little Lights Liverpool became a safe, supportive second home for Jude and his family.
When Eberley first heard the word “hospice”, fear took over. Like many parents, she pictured somewhere clinical and final, a place associated only with end of life. She had always known of Little Lights from living locally, but was unaware how much support it could offer her son Jude and her whole family.
Jude was born in May 2021 after a normal pregnancy and delivery. In the early weeks of his life, I knew something was not right. He was struggling to gain weight and, at around 11 weeks old, he began having infantile spasms, a type of seizure. After hospital tests, Jude was diagnosed with epilepsy and, several weeks later, with GRIN2B, a rare genetic condition affecting only a small number of children worldwide.
Since then, life for Jude and our family has been complex and unpredictable. Jude is non-verbal, has a visual impairment, low muscle tone, a PEG feeding tube, brain stem dysfunction and episodes of breathing apnoea. His seizures and medical needs can change suddenly, so everyday family life is shaped around medication, feeding routines, appointments, hospital admissions and constant vigilance.
For me, that means operating on very little sleep and always planning for what might happen next. Even simple family days out take careful thought: how accessible a place is, how far away the nearest hospital might be, whether we could get home quickly if Jude became unwell, and how his brothers, Ethan and Lucas, would cope if plans had to change.
“I knew something wasn’t right in those early weeks, and from that point on our lives changed completely.”
Taking the first step into Little Lights
When a community physiotherapist first suggested Little Lights, I hesitated. It took around four months before I felt ready to agree to the referral. I looked at the website and social media, trying to understand what Little Lights did for children like Jude and what it might mean for all of us.
Jude began settling-in sessions in January 2022. On his first visit, he stayed for just an hour. I walked out of the front door and cried all the way to my mother-in-law’s house, overwhelmed by the fear of leaving him with someone else. Jude cannot tell people what he needs, so trusting others to recognise changes in him felt enormous.
“Leaving Jude with someone else for the first time was one of the hardest things I have ever done.”
But gradually, that trust grew. Little Lights did not feel like the clinical environment I had imagined. From the moment we walked through the door, we were welcomed by staff who created a calm, safe and homely atmosphere. Over time, the nurses came to know Jude not just as a child with complex medical needs, but as Jude, with his cheeky smile, his personality, his likes, and the little signs that show when something is wrong.
Building trust with the team
A defining moment came when Jude’s seizures became difficult to control and he needed rescue medication he had never had before. Staff at Little Lights acted quickly and calmly, contacting me and following his care plan, which meant calling an ambulance. Soon afterwards, when Jude became unwell again, members of the Little Lights team attended a multi-disciplinary meeting with us to advocate for him and explain how his needs had changed.
“Without Little Lights, our lives would be very different. They are an extended family to us, not just a hospice for respite.”
For me, that meeting was a turning point. I realised the team knew my son in the same detailed way I did. Their voices helped professionals understand that Jude needed more support, and days later he was admitted to hospital for six and a half weeks in high dependency care. Throughout that time, Little Lights remained alongside us, visiting Jude in hospital, sitting with him so I could go home briefly, and checking in to ask what support we needed.
“That meeting showed me they knew Jude like I knew him. They could see when something had changed, and they helped us get him the support he needed.”
Support for the whole family
That support extends far beyond respite. When Jude stays at Little Lights, I can spend focused time with Ethan and Lucas, going for food, bowling, shopping, watching a film, or simply sitting at the table to build Lego without clock-watching or dividing my attention. It gives me the chance to be their mum, not only Jude’s “medical mum”.
“When Jude is at Little Lights, I can be fully present with Ethan and Lucas. It gives me the chance to simply be their mum.”
Little Lights also supports Jude’s brothers directly. Sibling days and residential trips give Ethan and Lucas time away from the pressures of daily life, alongside other children who understand what it is like to have a brother or sister with complex needs. For Lucas in particular, Little Lights has become something he is proud of and keen to talk about.
For me, meeting other parents through stay-and-play sessions has also helped ease the loneliness that can come with caring for a child with complex needs. Friends and family may be supportive, but other parents living similar lives understand in a different way. They understand the lack of sleep, the uncertainty, the hospital visits and the emotional weight of it all.
Therapy and wellbeing support have offered another kind of relief. Even an hour of relaxation can feel restorative. Knowing that counselling and emotional support are available at Little Lights also matters deeply, especially when medical appointments, new diagnoses or changes in Jude’s health can feel overwhelming.
Making memories together
Today, Little Lights is woven into our family life. Jude comes for regular respite and, when he arrives, he recognises the sound of the buzzer and smiles because he knows where he is. He loves the hydro pool, enjoys activities and comes home with paintings, crafts, photographs and memories made with the people who care for him.
“Jude knows when he is there. He recognises the buzzer, he smiles, and I know he feels safe.”
For us, Little Lights is a safe place, a support network and an extension of our family. It is a place where Jude is understood, where his brothers are included, and where we can breathe, recharge and make time for each other.
For our family, Little Lights is so much more than a hospice. It is a place where Jude is understood, his brothers are included, and we can rest, recharge and feel supported.
Jude’s condition is life-limiting, but that does not stop his life. At Little Lights, he is safe, known and able to make special memories with people who understand him.