Isaac’s story: “Our first soft play, first swimming, first days out all happened here.”
Isaac lives in Essex with his mum Lucy, dad Niall, brother Riley and sister Scarlett. During treatment for Leukaemia, he suffered two potentially life-threatening episodes of septic shock that left him needing a prosthetic leg. As the family struggled to cope with caring for Isaac alongside two other children while juggling work, Little Havens stepped in to offer them just the support they needed, for as long as they needed it. Here’s Isaac’s story told by Niall:
“Isaac was born with a lymphatic malformation in his right leg – basically swelling of the whole leg because his lymphatic system wasn’t functioning properly. In his first year, he was in and out of the hospital all the time. He’d be on antibiotics, come home for a couple of weeks, then we’d be straight back in again.”
After being put on long-term antibiotics, Isaac enjoyed three years of stability and managed to avoid hospital. But when he came off the medication, things changed very suddenly.
“One night, Isaac just wasn’t right. We spent over 20 hours in A&E before being seen by a doctor. At first, they thought it was tonsillitis, but after blood tests, we were told his organs were shutting down. He was blue-lighted to Great Ormond Street Hospital. After several tests, they did a final one to rule out leukaemia, and it came back positive for Acute Lymphoblastic Leukaemia. It was very difficult news, but at least we had clarity and knew what we were treating.”
Because of his existing health problems, doctors couldn’t use aggressive chemotherapy. “They told us his body wouldn’t tolerate it, so he had about 70% of low-maintenance chemo. He was immunosuppressed, which meant he pretty much lived in the hospital for three years with temperatures, pain and sickness. In between, we tried to keep things as normal as possible with physio, prosthetics appointments and even school – though he never managed a full week.”
During his illness, Isaac suffered two episodes of septic shock. The second led to the loss of his leg, several fingertips, and required extensive skin grafts.
“Because we have two other children, one of us would stay with Isaac and the other would be at home with Riley and Scarlett, as well as working. We then spent a year in GOSH while he recovered. There was a long gap between the time he learned to walk again and when he received his prosthetic. That’s when a support worker suggested Little Havens might be able to help us all.”
At first, Niall admits, he wasn’t sure. “I’d heard of Little Havens but didn’t really know much about it, apart from assuming hospices were just for older people. A support worker suggested we could go there for the day. I Googled it, asked to visit, and we just came for a wander around. The kids loved it – especially the garden. For us, it was so nice to see them just being ‘normal’. There’s so much space, wheelchair accessible equipment, and for the first time, we could let our guard down.”
At Little Havens, the family didn’t feel judged or stared at. “We’d tried a couple of disability-friendly parks before, but often children would point out Isaac’s leg. Here, everyone is relaxed, and we don’t feel self-conscious. It’s exactly what we needed.”
The hospice also gave them reassurance. “We’re paranoid about going to soft play or swimming because of Isaac’s immune system. But if something happens here, the staff are experienced and trained. We feel safe.”
Niall remembers their first impressions. “Walking through the hospice was better than I expected, but also harder than I expected. You see the children, and it hits you why you’re here. But then you realise it’s not a sad place – the children are happy; the families are happy. We’ve met families who have used Little Havens for end-of-life care, but for us it’s been about something different. It gave us the comfort of knowing our children were enjoying themselves, while we had the safety of staff around if anything happened with Isaac.”
The family has now been visiting Little Havens for over two years. “Running around the gardens gets the kids off their phones and back to being children again. For Isaac, it’s lovely because he doesn’t have other kids coming up to him asking questions. The children all play together, no matter their disabilities. It’s opened Riley and Scarlett’s eyes too, showing them that their brother isn’t the only child with additional needs.”
In September 2024, after years of treatment, Isaac rang the bell to mark the end of his leukaemia treatment.
“He’s still on permanent antibiotics but finally able to live his life. He’s got his prosthetic leg and is doing really well. He’s back at school full-time, still has fatigue and some pain, but he manages it so well. He’s artistic, loves wrestling, Minecraft and swimming – and for someone missing a leg, he’s an adrenaline junkie! He loves a fast rollercoaster.”
Niall is now his full-time carer, helping to arrange Isaac’s physio, OT, wheelchair and prosthetics appointments.
The family say Little Havens has been a lifeline. “It helped us transition between hospital and home after Isaac’s amputation – a slow introduction back to reality. Our first soft play, first swimming, first days out all happened here. It’s like a getaway. If we ever needed a night away as a family, we could come here.”
They want to share their story so others know what Little Havens can offer. “I’d highly recommend it – it’s not the hospice you might imagine. It’s got everything – quiet areas to relax, beautiful gardens, and it is fully wheelchair accessible. You don’t pay for your care here, so it’s not like an expensive day out. And if we miss a visit because Isaac is unwell, that’s OK.”
“We’ve been to a lot of other medical environments that feel emotionless. Here, everyone cares. The staff want to be here, they talk to you and never judge. Places like this are vital for families like ours. They’ve kept us sane.”
Looking to the future, Niall says, “We just hope there’s no relapse, and that we can get back to our happy selves, stay positive, be a family and make as many memories as possible.”