A bump, fall or even a common cold could result in an emergency hospital admission for three-year-old Jacob.
His vulnerability is a cause of constant worry for mum Frances, but a stay at Demelza offers much-needed reassurance.
“When Jacob goes to Demelza this is the only break I get,” she explains. “I still worry about him, but when he’s at Demelza I worry less, knowing that he’s in safe hands, with trained nurses and care assistants.”
Jacob has adrenal insufficiency, a disorder where the adrenal glands do not produce enough of certain hormones, which play key roles in the functioning of the human body. His immune system is affected as well as his blood pressure and metabolism. He has to be given steroids four times a day and is at constant risk of an adrenal crisis which can cause death.
Frances said: “Some children who have an adrenal crisis do not pull through. I know what to do if this happens – and so do the staff at Demelza. They are experienced and have looked after other children with similar conditions.”
Demelza provides short breaks for children with terminal conditions, giving families the choice to leave their child in a safe environment or to stay overnight too if they wish.
For Frances, having the support of Demelza means she can spend quality time with her other son five-year-old Jackson, while Jacob is having fun with the care team at Demelza’s hospice in Eltham, South East London
Frances added: “The first time I left Jacob I phoned three times, but the nurses told me to try to relax and as time has gone on I have found that a bit easier.
“Because of Jacob’s condition friends and family are too scared to look after him. When he’s at Demelza I can catch up on sleep, or spend time with Jackson, who does miss out.
“Jacob loves it at Demelza. The staff are lovely and his favourite thing is the sensory room