A COUPLE whose baby died from a rare lung disorder have raised thousands of pounds in an effort to increase awareness of the condition.

Amelia Ashwell’s baby, David, died 15 days after she gave birth to him, in March last year.

Mrs Ashwell is a medical researcher at Durham University and her husband, Simon, a doctor at The James Cook University Hospital, in Middlesbrough, but both found there was virtually no information about the fatal condition.

Mrs Ashwell, 36, said: “Coming from our background it was such a shock to be given a diagnosis for something where nobody can give you information.

“I’ve never come across something where there’s so little detail.

“Worldwide, there’s about 200 cases among newborns, but there are probably many more undiagnosed cases because the only way to diagnose it is through a lung biopsy.

"That’s quite a procedure to put a small baby through who is already very poorly.”

The couple found their son was having difficulty breathing shortly after they brought him back to their home in Stokesley, North Yorkshire.

At one point he went blue and had to be resuscitated at James Cook. He was later transferred to The Freeman Hospital in Newcastle, where he was hooked up to a machine that could breathe for him. His condition mystified medical staff until they began looking into Alveolar Capillary Dysplasia, a rare and fatal lung condition in babies. Sadly, after 15 days David died.

Now the couple have set up the David Ashwell Foundation to raise money for medical research into the rare condition.

On Saturday, they managed to raise £8,000 with a live music charity event at The Treebridge Hotel, between Middlesbrough and Stokesley.

A silent auction was held at the event, where the top lot was dinner in Belfast with Hollywood star Aidan Gillen, from The Wire and A Game of Thones. The lot, which included a flight voucher and hotel accommodation, went for £950.

The foundation’s next fundraising event will be a car show in Stokesley on August 12.

On July 7, Andrew Heath, a colleague of Mr Ashwell, will be taking part in the Marmotte Cyclosportive Challenge. It involves steep climbs and descents through 108 miles of the French Alps, climbing 17,000ft.

To donate to the foundation, or sponsor Mr Heath, visit uk.virginmoneygiving.com and type in the David Ashwell Foundation.