When Danielle’s son Myles was just two years old, life changed forever.
Myles was diagnosed with stage 4 high-risk neuroblastoma, a rare and aggressive form of childhood cancer. What followed was more than a year spent in hospital, enduring intensive treatment that left lasting effects on his health and wellbeing.
“During Myles’ treatment, he couldn’t talk, he couldn’t walk, and he became really afraid of nurses and doctors,” explains Danielle, who lives in Carlisle. “A lot happened to him during that time.”
Today, Myles is approaching his fifth birthday. While he is thankfully in remission, the impact of his treatment remains. He is tube fed, profoundly deaf in both ears, has reduced kidney function and mild chronic heart failure, alongside other complex medical needs.
After spending so long together, the thought of being apart was daunting for both Danielle and Myles.
“I think I’m just as attached to him as he is to me,” she says. “To know that we can trust these people to take care of him, and that he is safe here, is huge.”
Before being introduced to Jigsaw, Danielle believed the hospice was only for children receiving end-of-life care.
“I’d heard of Jigsaw before, but I thought it was part of palliative care. I didn’t know it was somewhere that Myles could come to as well.”
When Myles was preparing to start school, Danielle and her family were understandably anxious. His health can change very quickly, and after everything he had been through, being around healthcare professionals could still be frightening.
“We were really nervous about him going to school, but we knew that if he got used to coming to a place like this, where there were nurses and doctors, then if anything did happen, he would be in a safe environment.”
The family began attending Jigsaw less than a year ago, and the difference has been remarkable.
“He really struggles to be away from me and has quite bad separation anxiety, so I thought it would be nice for him to have some time here and realise that not every time he sees nurses or doctors, something bad is going to happen.”
Now, Myles looks forward to every visit.
“He’s not scared of people dressed in nurses’ uniforms anymore. He enjoys being around them, and I think Jigsaw has played a really big part in that.”
For Myles, Jigsaw has become affectionately known as “the nurse’s house”.
“The smoothie bar is his favourite place,” laughs Danielle. “As soon as we come in, that’s where he wants to go. He loves playing with Lego, colouring, having a bath, watching television and running around.”
Most importantly, Jigsaw gives Myles the freedom to simply be a little boy.
“I think he enjoys the independence of being here. It gives him the opportunity to show his little character and spend time doing things he enjoys.”
Danielle says it is the warmth and kindness of everyone at Jigsaw that makes such a difference.
“Everybody knows his name and talks to him. From the nurses to the reception team, everyone is so smiley and caring. It feels really homely.
“Nothing is ever too much to ask for. They made us feel completely at ease.”
While Myles enjoys spending time at Jigsaw, Danielle and her family benefit too. As parents of three children, respite care gives them valuable opportunities to spend quality time with their other children, knowing Myles is safe and happy.
“We know he has a lovely time. When we pick him up, he tells us all about the fun he’s had at the nurse’s house.”
Family events have also helped Myles’ siblings feel part of the Jigsaw community.
“The Christmas party was amazing. Myles was able to bring his brother and sister and they absolutely loved it.”
Looking back, Danielle struggles to imagine what life would be like without the support of Jigsaw.
“It’s not just knowing that he’s being looked after. His medical needs are being looked after too. If anything happens to him, he’ll be okay here. That gives us such a sense of safety.”
For families considering accessing support, Danielle has a simple message:
“Just come. It’s amazing. I can’t explain how much this place means to us. We are so grateful to have Myles here and to have Jigsaw in our lives.”
“It’s become a place where Myles feels safe, happy and confident – and that means everything to us.”
