Just being together is best gift we’ve ever had: Dylan defies the odds to come home for Christmas Lead

Battling eight-year-old Dylan Kirsopp suffers severe cerebral palsy, epilepsy and a rare condition that means he cannot eat and has to be fed through a drip.

He has spent around 42 weeks in hospital as he battled infections and life-threatening setbacks.

As the months rolled by his condition only seemed to worsen and at one stage his family feared he would never leave the ward.

But brave Dylan had other ideas and has rallied amazingly to give doting mum Mandy, 36, dad John, 37, and twin brother Murray a gift beyond their wildest dreams – a family Christmas together.

“It really means the world, it’s a massive step,” said Mandy, who has lived in hospital at her son’s side to care for him the whole year.

“This year has been the worst of our lives and to be together at home at Christmas is amazing.

“Dylan’s brother Murray is just absolutely hyped about Christmas and then to have his brother and mum home too, he’s absolutely ecstatic. It’s going to be amazing.

“We’re going to make it the best Christmas we’ve ever had because it is the best present we’ve ever had.

“At one point we didn’t think we’d get Dylan home at all, never mind for Christmas, so it is just amazing for them to be together, to be happy and well for Christmas.”

Dylan and Murray were born prematurely at 23 weeks, weighing little more than 1lb. They faced a battle to survive.

Murray recovered well and, aside from being autistic, is a perfectly healthy little boy.

But Dylan has a catalogue of severe problems including cerebral palsy and epilepsy, and more recently he was diagnosed with intestinal pseudo-obstruction.

It means he will never be able to eat food and must instead receive nutrients through a drip.

In July The Sunday Post revealed the Government was preparing to stop all of Dylan’s disability benefits – as he had become too ill to qualify.

Rules state if a child is in hospital for 12 weeks or more their Disability Living Allowance and Carer’s Allowance would be scrapped. Benefits bosses were even planning to remove the family’s wheelchair-adapted car.

However, after we revealed their plight, bosses backtracked and let them keep the lifeline payments.

Mandy, from Gateshead, Tyne and Wear, said: “They did eventually contact us to say they were happy to continue making Dylan’s payments during the hospital stay.

“But they did say in a side note it should not be taken for granted this would be the case for everyone or in every situation so if Dylan comes out of hospital and goes back in we will be back to square one.”

For the short-term at least, the family is hoping for a brighter future. Mandy and Dylan are living in an disability-friendly home provided by Gateshead Council and they will join John and Murray at the family home when adaption work is completed in January.

But it means they are already spending every evening and weekend together and, crucially, allows them to be under the same roof on Christmas Day.

Mandy added: “The future is still quite bleak for Dylan but it’s the happiest I have ever seen him. He’s put on a tonne of weight – nearly 11kg. He’s happy, healthy and comfortable a lot of the time now.”

Amanda Batten CEO of charity Contact a Family, which campaigns on the issue, said: “Last summer, the Supreme Court found the rules suspending payment of DLA after 84 days in hospital breached human rights.

“We were delighted by the ruling which will make such a difference to the estimated 500 families who are affected each year by this rule.”

A DWP spokesperson said: “For 20 years, the policy has been that DLA is suspended when a child is in receipt of long-term in-patient care.

“This is in order to prevent double provision – the taxpayer paying twice for the costs of care.

“The Government recognises the difficult situation faced by parents and families where a severely disabled child requires a long stay in hospital for treatment and we are carefully considering the findings of the Supreme Court.

“Until ministers have decided on any changes to DLA policy, there is guidance in place for families to continue to receive DLA when their child is in hospital.”