Teenaged siblings with a life-limiting condition that affects just five people worldwide have returned from a £6,000 once-in-a-lifetime trip to Paris.

Lucy Topham, 19, and her younger brother James, 16, of Farndon, made the six-day trip to one of the world’s most popular cities thanks to the Make-A-Wish Foundation. It included full access to Disneyland Paris and the Eiffel Tower.

The siblings travelled with their mother, Sam, and four staff from NurtureCare, Nottingham, because the teenagers need 24-hour medical care.

Gallery1

“We thoroughly enjoyed the experience. There are so many moments that cannot be recreated,” said Sam.

“To get my daughter to the Eiffel Tower was something I never thought would be possible.

“The two of them have lived way beyond what anybody has expected and this trip was one of those now or never moments.

“It came at the perfect time as we have spent about quarter of the year in hospital with James.”

The family were nominated for Make-A-Wish over a year ago, but because of James’ deteriorating health, they could not travel.

The two siblings both have pyruvate dehydrogenase E3-binding deficiency, a condition characterised by variable lactic acidosis and neurological dysfunction.

Lucy, who cannot walk, talk or understand commands, has the mental age of a three-month-old, and is cared for at Every Sensation, a day care service in Sutton-in-Ashfield, while James, who has the mental age of one, is cared for at home because of his condition.

Sam said he could communicate and understand basic commands, but had been struggling recently.

Sam said Make-A-Wish did everything possible to provide a safe, expense-free and enjoyable trip for her children.

“They were amazing to us,” she said. “People knew we were with Make-A-Wish and, because of that, they made more of an effort and did that bit extra for us.

“They do such a good job and they have given me and the children memories that cannot be taken away. We will always remember it.”

James wanted a trip to Disney-land Paris, while Lucy was hoping to visit her favourite city ­— Paris.

Jenny Cook, director of wish- granting at Make-A-Wish, said: “We are delighted that Lucy and James enjoyed their trip and hope it will give them many years of happy memories.

“For a child with a critical illness, a wish can be a chance to replace the pain and heartbreak with laughter and joy.

“A child’s life shouldn’t be about illness, hospitals and diagnosis ­— it should be about wonder, joy and hope.”