Roy's sister Anita was born with hydrocephalus, often called 'water on the brain'. Her illness means she can experience blurred vision, severe headaches and have difficulty walking.
Roy wants to look after his sister and make her happy. To him, being a carer and a brother are one and the same.
But sometimes Roy needs time and space for himself. Time to study for exams, time to have fun with his friends and a space where he can talk to other people who, like him, are caring for their brother or sister who is dying.
The Elephant Club at Helen and Douglas House offers Roy that space. In this video he explains more about why the club is so important to him...
Part of supporting the whole family at this time is planning for their final moments together. Experts stressed how important this was.
The guidance says medical teams should talk to the child and their family about where they’d like to spend their final days together and help arrange that care where possible. The team should guide them through any treatment decisions they’ll need to make and ensure that spiritual support is available, if they want it.
NICE says the medical and social care team responsible for a child’s care at the end of life should be aware the needs of the family may change as the child’s illness progresses. The guideline says they need to adapt to the family’s requirements where possible.
This may mean arranging a birthday party at the hospice or for school work to be sent to the hospital if the child is taking exams and wishes to study.
Amana's sister Imogen was born with cerebral palsy. She suffered from severe seizures and needed a lot of medical care.
Tania, Imogen's guardian, says that Amana always wanted to be involved in Imogen's care. She wanted to be there for her big sister, to check her medication was right and know that she was getting the care she needed.
But Tania knew that Amana needed support too. Sometimes she needed to know that someone else was taking care of Imogen so that she could take a step back to have her own fun.
In this video Tania talks more about why it was so important for Amana to have some time to herself...