Children's Hospice Week: Kane's story
Kane was diagnosed with mitochondrial disease when he was only three months old.
His daily seizures and limited movement meant his mum and dad, Kerri and Craig, had to manage his constant care in shifts. He was just under three years old when doctors told them Kane’s condition was no longer compatible with life, and he would die soon.
Their family home wasn’t set up to facilitate end of life care, and his parents didn’t want to spend his last days in hospital, so they decided to come to Demelza.
The family spent four weeks at the hospice, where they were fully cared for by Demelza. Kane had 24/7 expert nursing care and his family were supported with medical decisions.
Most importantly, they were finally able to step outside of their roles as carers, and make lasting, precious memories with their child.
Hear from Kane’s mum Kerri, dad Craig and nan Kathy to learn more about the care and support they received at Demelza, and why this meant so much to them in their darkest time.
In addition to specialist care, Demelza were able to provide everything Kane’s family needed during their stay, even down to their meals, so they could just be present and enjoy spending time with Kane in his final days.
It’s this level of care and support that the family simply wouldn’t have been able to access anywhere else.
Lead Nurse Megan and Senior Registered Nurse Jess share what it was like to care for Kane’s family and how our teams work tirelessly together to ensure families have the expert nursing and practical support they deserve.
Demelza’s Music Therapist Pete also supported Kane’s family, providing comfort and connection throughout Kane’s life, and at the end. Hear from Pete about how music therapy gives families a safe place to hold their emotions.
“I cannot thank Demelza enough for everything they did, not only for Kane but for our family during the worst time of our lives. It was the best place to be in the worst situation.”
