The family of a dinosaur-mad boy who tragically died after bravely fighting a rare genetic condition recently marked what would have been his tenth birthday with a celebration dinner beneath Dippy the Diplodocus.
Little Ewan Knox from Carlisle was born in 2014 with Hallermann–Streiff syndrome – so rare it affects only about 150 people worldwide – which meant his lungs didn’t develop properly.
Despite his condition, Ewan was known for his huge beaming smile, his irrepressible charm and his love of all things dinosaur related. Sadly his condition meant Ewan died just shy of his second birthday.
“His life was a whirlwind from the start,” Mum Vicky shared. “He was rushed into the Great North Children’s Hospital almost as soon as he was born because his airway was collapsed.”
At just three weeks old his family were told of his rare condition, however, it didn’t stop the little boy developing into a happy toddler.
Vicky said: “He sailed through his early stay in hospital. Even after he was diagnosed with his condition, he thrived, went from strength to strength and he developed into a happy and chilled little boy.”
As part of his sensory development Ewan used an iPad with apps. One app made dinosaur noises – something the little boy loved. Not only did it engage his attention, but the app also helped Ewan interact with his surroundings and his fascination with all things Jurassic began.
A trip to London’s Natural History Museum followed, and Ewan’s love of Dippy was firmly established.
“That was the first time he saw anything like that,” Vicky said. “We had lots of photos taken and that just became a very special trip for us, one we looked back on fondly.
His love of dinosaurs and Dippy would bring the family some measure of comfort when Ewan sadly passed away.
Dad Mike said: “One of things we did to move forward was to buy a VW Campervan and the first thing we did was get a great big Dippy emblem on the sides and it became known as ‘The Dippy Bus’. Everyone would recognise it and spot it as we were driving around.”
When Dippy went on tour to venues around the UK the family decided to use the bus to visit the famous cast at different venues.
Vicky added: “We went to Glasgow, Norwich, all over, we followed him around to mark special occasions or just to get together with family, Dippy just drew us to wherever he was. It was the best van ever!”
Another way the family focused themselves following the loss of Ewan was to raise money for Crawford House at Great Northern Children’s Hospital.
Run by the Sick Children’s Trust, Crawford House offers accommodation to parents whose children require long term hospital treatment.
Mike said: “Crawford House was a lifesaver when Ewan was poorly, I don’t know how we’d have got by without it. But they survive solely on donations, so after Ewan passed it helped us focus by putting efforts into raising money for them so other families could have the same support we did.”
The family are still raising funds for the charity, you can donate here.
To mark Ewan’s tenth birthday the family wished to mark the occasion by having a celebratory meal with their family beneath Ewan’s favourite dinosaur, Dippy, at Coventry’s Herbert Art Gallery & Museum.
Herbert Art Gallery’s Lisa Ford is Head of Learning and Engagement and supported the Dine Under Dippy experience.
Lisa said: “Ewan’s story really touched the hearts of colleagues across CV Life and we wanted to ensure an experience for them to honour his memory and his birthday could go ahead. No family should have to experience the loss of a child and it has been incredible to see the strength they have as they have moved forward and channelled their time and efforts into creating positive memories and helping others.
“Museums can be truly magical places that create lifelong memories for our visitors and it is an honour that we have been able to play a small part in creating one of those memories for Vicky, Mike and their family.”