THE parents of four-year-old Rose O’Leary-Hall, who died this month after battling a rare heart condition since birth, have called on the Government to not immediately cut off benefits for families such as theirs.

Sue, 47, who works at Leeds University and also runs her own education training company and Katie, 39, head of English at Ermysted’s Grammar School in Skipton, had to reduce their working hours to care for Rose and prepare her for school, which they hoped would happen early this month if the surgery had proved successful.

The couple, who live in Pool-in-Wharfedale, were shocked when the Disability Living Allowance they had been receiving while caring for Rose - which amounted to £407 a month - was stopped on the day Rose died, September 4. A memorial party was held for Rose on Saturday.

Rose was born with a terminal heart defect called Interrupted Aortic Arch, an ultra-rare condition which affects only one in 50,000 babies. She had just undergone a gruelling surgical procedure to repair her heart but following the surgery in August, her heart was too damaged from her condition to allow the operation to succeed.

They had been in receipt of Disability Living Allowance to top up their lost earnings - which was immediately stopped on the day of Rose’s death.

Katie said: “We knew we’d lose the DLA but we didn’t think they would cut it off immediately.”

Sue added: “It was a significant amount of money. Losing it straight away is like a double-whammy; you don’t want to have to be thinking about how you’re going to make up lost income when you are grieving losing your child.

“There needs to be a change in the law. There needs to be a period of grace with DLA so it does not just cut straight off, because parents in our situation just cannot suddenly start thinking about applying for jobs and going for interviews the day after they lose their child.”

The charity Together for Short Lives, which works with families of children with long-term illnesses and disabilities, is also calling for a change in the rules.

Andy Fletcher, CEO of the charity, said: “The prospect of losing a child is a parent’s worst nightmare. Tragically, for the parents and carers of 5,000 babies, children and young people who die in England and Wales every year, this nightmare becomes a reality.

“If the child dies with a long-term disability, they may also have to endure significant short-term financial hardship caused by the immediate loss of their income from disability living allowance.

“This can often compound the debt legacy which families of children with life-limiting or life-threatening conditions may have incurred as a result of giving up their jobs, and the additional costs of caring for their child over a long period of time.

“We call on the government to do more to help families to meet the additional costs of caring for a child with a life-limiting or life-threatening condition, including after a child has died. Ministers should consider a run-on period to help ensure families do not face a financial cliff-edge when key benefits such as disability living allowance stop.

“Parents like Sue and Katie should not have to worry about paying their bills at the most distressing time of their lives.”

A spokesperson for the Department for Work and Pensions, which manages DLA and other benefits, said: “Our sincere condolences are with Rose’s family during this difficult time.

“Disability Living Allowance supports anyone under 16 with the extra costs associated with a disability or long-term health condition. Bereaved parents and carers may be entitled to Carer’s Allowance, Child Benefit and tax credits for up to eight-weeks after the loss of a child.”