Just days after the birth of twins Edward and Edie Wilson in March 2025, parents Luke and Lucy from Darlington became concerned about how hard Edward was finding it to breathe. They took him to A&E at Darlington Memorial, where he was rapidly rushed into the resuscitation suite. He had a collapsed lung.
Emergency transfer to Newcastle RVI
Edward was transferred by emergency ambulance to the Royal Victoria Infirmary (RVI) in Newcastle. Over around a fortnight, he received critical care and was diagnosed with Primary Ciliary Dyskinesia (PCD), a rare lifelong genetic condition affecting the tiny hair-like structures that help keep airways clear.
Luke recalled the awful moments: "We knew something wasn't right. He was working so hard to breathe and was becoming grey. We took him to A&E in Darlington and within seconds they rushed him into resuscitation. His oxygen levels had dropped dramatically, and he'd suffered a collapsed lung. It went from being told it was probably nothing serious to wondering whether we were going to lose him."
Support from Sick Children's Trust
Edward received specialist care at the RVI over the next ten days, which presented challenges given the distance to Darlington. Luke explained: "Jude had gone from being an only child to becoming a big brother to twins, and then almost overnight his mum was gone because she had to stay with Edward in hospital. He was only two and couldn't understand why everything had changed. He'd cry because he just wanted his mummy."
The Sick Children's Trust charity offered a room in Crawford House on the RVI site, allowing the family to stay close by and together. Luke said: "It completely changed everything for us. It made an awful situation that little bit easier because we could all stay together. Crawford House became our base. One of us could stay with Edward while the other could spend time with Jude and Edie, giving Jude a little bit of normality during a really confusing time. It was only a few minutes from the hospital, so we were always close if Edward needed us. We genuinely don't know how we'd have got through that without Crawford House."
Father to run Great North Run
Now Edward is doing well, though the family are taking things "one day at a time". Luke added: "He's here, and we're incredibly grateful for that. We'll continue to support him every step of the way."
This September, Luke is taking on the Great North Run for the Sick Children's Trust. He said: "I've done the Great North Run before, but after everything we've been through with Edward, I wanted this one to mean something. Running for The Sick Children's Trust is my way of saying thank you."
