Marathon challenge to boost research into rare lung condition

Posted on in Fundraising, Research, Services, The trust

A diabetes consultant whose baby boy lost his life to a rare condition aged just 15 days is to mark the fourth anniversary with a marathon fundraiser.

Dariush Kamali, George Kamali 2, Amelia Ashwell, Auden Ashwell 2 and Simon Ashwell. Photo courtesy of The Gazette

From left: Dariush Kamali, George Kamali 2, Amelia Ashwell, Auden Ashwell 2 and Simon Ashwell.
Photo courtesy of The Gazette

Amelia and Simon Ashwell lost baby David to Alveolar Capillary Dysplasia (ACD), a fatal lung condition which has affected only a handful of babies worldwide, in March 2011.

Since their loss, the Stokesley couple, who now have another son, two-and-a-half-year-old Auden, have raised more than £138,000 for research into the condition with the help of their supporters.

Now Simon, 42, a consultant in diabetes and endocrinology at The James Cook University Hospital, will be joined by his sister Gemma Ashwell and friend, fellow Middlesbrough consultant Dariush Kamali, to take on the Edinburgh Marathon.

Amelia, 39, said: “We have so far co-funded four research projects into ACD with the ACD Association, and are about to fund a fifth.

“Looking back to when I first heard those words in 2011 and we went to go and see what was written about it, I realise that even now, just four years on, there’s so much more available.

“It’s such a rare condition that there’s no funding for research unless people who have been affected, like us, raise money.

The four research projects funded to date are assisting US-based, world-renowned experts in this field who are looking into the abnormalities in the FOXF1 gene, which are known to result in ACD.

Simon said “I’m a runner but I usually go fell running. A marathon is always a challenge, but I have completed the London Marathon before.

“Training is going to be a challenge as Dariush and I are busy with work, and Dariush has a son and a newborn, so he’s definitely got his hands full!”

Simon and Dariush’s two-and-a-half-year-old sons, Auden and George, are best friends and will both be cheering on their dads on the day, along with Amelia and Dariush’s wife Perdy.

Amelia added: “So far, we’ve raised almost £1,500 for the Marathon run but we’re hoping to raise a lot more.”

To donate, visit http://virginmoneygiving.com/DAFEdinburgh15