Daniel Green, six, whose brain is damaged in three areas, was diagnosed with cerebral palsy and mitochondrial disease at four months old leaving him struggling to stand, sit and eat.
He was placed into palliative care in 2021, but his family took comfort in the fact he would be able to receive care at Bluebell Wood Children’s Hospice in Sheffield.
Together For Short Lives, an organisation which supports children on palliative care, welcomed the decision to extend energy bill and childcare support in this month’s budget - but admitted they were concerned that the government has not addressed the £300m annual gap in funding.
Zoey Darcy, Daniel’s grandmother, said she feels families like hers were ‘forgotten about’ during the government’s budget announcement.
In Parliament this week, MP Stephanie Peacock highlighted Daniel’s story - asking the government for a guarantee that Daniel would be able to access the care he needs when he needs it.
She said: “My six-year-old constituent Daniel has cerebral palsy and mitochondrial disease.
“He has received palliative care from the Bluebell Wood Children’s Hospice, which was forced to close temporarily last year due to staffing pressures.
“It also has ongoing concerns about rising bills.
“Will the Deputy Prime Minister reassure Daniel’s family that he will receive the palliative care he requires, as and when he needs it?”
Dominic Raab confirmed he would look into Daniel’s case.