Demelza is here to support children with serious and life-limiting conditions and their families at every step – from first diagnosis and for as long as we’re needed. This Children's Hospice Week, we hear from Jaxson-James' family on the support they have received from Demelza. 

"I was 16 years old when my brother, Shane, was referred to Demelza due to a severe form of epilepsy. When he stayed at Demelza, we knew he was in the safest possible hands, both clinically and emotionally and my mum could temporarily switch off from being a 24-hour carer.

Although Shane eventually left Demelza’s services, he tragically died in 2021 after contracting COVID-19, age 24. Our loss is still so fresh, and I never thought that just a year after his death, I would be back at Demelza with his nephew – my son – Jaxson-James. Jaxson was born with hypoplastic left heart syndrome. There was no time to welcome him to the world; at six days old, he was whisked away for the first of three heart surgeries he would need to survive.

When it became clear we would need ongoing support, our family was once again referred to Demelza. It made a difference to our situation immediately. Demelza’s family support team arranged support for Jaxson’s grandma and helped us apply for a grant which meant we could pay our bills during a lengthy stay in hospital.

Jaxson loves Demelza’s Little Dots playgroup which is run by a healthcare assistant who also cared for his uncle Shane. It’s comforting catching up with her and sharing our memories of him. The nursing and care team is amazing with Jaxson; they bring out his smiles and giggles, and their clinical expertise gives me and his dad Jim the confidence to hand over his complex care to them.

Jaxson loves the sensory room – with the heated waterbed that keeps him cosy despite his poor blood flow – and having use of the hydro pool at Kent is a godsend considering Jaxson may never be well enough to use a public pool.

Without Demelza, we’d be isolating at home, too scared to take Jaxson out in case he catches a virus that could kill him. Demelza has helped us live a happier life - we don’t know what the future holds for Jaxson but we’re able to enjoy every precious day we have together."

Laura, Shane’s sister and mum to Jaxson-James