'Hospice care was absolutely vital for our son'

The mother of a child who died due to a rare brain condition said hospice care was "absolutely vital", as she praised the charity that looked after her son.

Fleur Bryant, from Outwood near Horley in Surrey, spent five weeks with her nine-year-old son Toby at Christopher's in Guildford, run by the Shooting Star Children's Hospice, before his death from Adrenoleukodystrophy (ALD) in May 2024.

Now, Fleur has praised the hospice for supporting her family and "becoming their home" at the end of Toby's life, and helping to give him a "good quality death".

It comes as the hospice calls for more support from the government to continue to provide its "first class" care, and support charities like it.

Fleur told BBC Radio Surrey: "Toby was an incredible little boy. He was obsessed with trains, and was incredibly funny - he had no idea how funny he was.

"It was an incredibly difficult period to navigate but the hospice were there for us. For our children the hospice became their home, and the staff with it their family."

ALD is a genetic condition which affects the membrane which covers nerves cells in the brain and spinal cord, and can cause problems with balance and seizures, according to Great Ormond Street Hospital.

Fleur said Toby was first diagnosed in December 2022, and over the course of 18 months "lost his ability to do everything".

Toby spent the last weeks of his life at the hospice, which also provided a flat for the family to live in during that time, and he died in his parents' arms on 26 May, 2024.

Fleur added: "A good quality death is something nobody wants to think about, but ultimately it was what we were able to achieve.

"I think hospices are absolutely vital for parents going through this situation."

During Children's Hospices Week, from 15-21 June, Sarah Hodkinson of Shooting Star Hospice said the charity existed "so that childhood is not stolen from children or their families".

She added: "A family arrived recently and their child was about to die, and they said 'I'm so glad we are here'.

"It is this army of people who wrap around a child and their family."

Despite the benefits, Shooting Star's chief executive Paul Farthing said while the care they provided was "first class", there needed to be a better solution to funding hospice care.

The Department for Health and Social Care's (DHSC) 10-year plan aims to use hospices to help provide more healthcare in the community, but Farthing said changes needed to be made to make this viable.

He said: "If our nurses worked in the NHS, they would be paid for by the DHSC.

"We need a better long-term solution about how this works if you want hospices to play a part in the 10-year plan."

A DHSC spokesperson said the government had made the "biggest investment in hospices in a generation", and would be providing details on how it would modernise the palliative care and end-of-life sector in autumn 2026.

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