Louie's Story
Baby Louie was born on 9th September, arriving 12 weeks early and weighing 3lb 7oz, taking his dad and mum Nancie by surprise during a ‘babymoon’ holiday.
The couple, who live in Mintlaw, had moved to Israel with Andrew’s work and had returned to the UK to visit family and do some shopping for things for the baby. During the trip, Nancie went to hospital with back pain, which was initially thought to be a urinary tract infection, however it was established she was actually in labour and the couple were stunned to be told their baby boy was on the way.
Louie was cared for in the neonatal unit at the Royal Aberdeen Children’s Hospital, where he began to have frequent apnoea episodes – a sudden cessation of breathing that lasts for at least 20 seconds.
Andrew explained: “Louie had several procedures including an MRI scan, blood tests, CT scans and x-rays, checking for obstructions in his respiratory system. One of his consultants noticed Louie making involuntary movements, which was one of the factors that led to us undergoing genetic testing to see if that could help to explain Louie’s condition. Nancie, Louie and I all provided samples for genetic testing to find out whether there were changes in any of his genes that could be causing his health problems.”
At just seven weeks old, Louie was flown to the Royal Hospital for Children, Glasgow, for surgery on his windpipe to try to reduce his apnoea. The family spent two weeks in the hospital, with Andrew and Nancie being provided with accommodation in the House.
While they were in Glasgow, the family were told that Louie has an ultra-rare genetic disorder, thought to affect less than 100 people in the world. Neither parent carries the mutated gene. “We were under the impression that the surgery would be the cure to his apnoea, so the diagnosis was a huge shock, especially as there are thought to be less than 100 people in the world with the same disorder as Louie,” said Andrew.
“He will have some additional challenges or require regular visits to the children’s hospital over the coming months and years, but he’s a healthy, thriving wee boy who is alert and gaining weight. He recognises the sound of his mum and dad’s voices, waking up when he hears us talking on the ward. We love talking to him and reading him stories like Jack and the FlumFlum Tree,” added Andrew.
After a move to the Royal Aberdeen Children’s Hospital from the neonatal unit, Andrew and Nancie hope to be able to take Louie home soon and settle into family life. The new parents have received immeasurable support from both The Archie Foundation and the House.
For Andrew, simply making a donation would not be enough to repay the support the couple has received from the charities. Already an ultra-runner – a passion that began during the Covid-19 pandemic – Andrew wanted to take on a challenge that would combine his love of running and the charities that have done so much to support the Smith family.
It was as he was running along the River Clyde while Louie was in hospital in Glasgow that Andrew came up with the idea for the challenge. He will leave the House at 7am on Saturday 1st June and run the equivalent of six marathons back-to-back, finishing at the Royal Aberdeen Children’s Hospital around 36 hours later. The journey will be around 165 miles, with a route likely to take in Glasgow, Stirling, Perth, Dundee, Montrose, Arbroath, Stonehaven and Aberdeen. He plans to run it in one go, with food stops on the way and micro naps at the side of the road – but no overnight stops.
“I have always had ambitions to push my own limits and my longest run to date is 100 miles of the Moray Way, which I completed in 21 hours 30 minutes. I was absolutely hooked,” said Andrew, who took up running just six years ago and quickly progressed from a 10km race in Aberdeen to taking on an unofficial 41-mile ultra-marathon from Dyce to Fraserburgh during lockdown. He will be supported by his training partner Jamie Pallister and coach Meryl Cooper, as well as family and friends.
“We are overwhelmingly grateful to both The Archie Foundation and the House Glasgow for all the kindness and care they have given Louie and us. Families rely on the kindness and generosity of the charities. Not once were we asked for anything and both charities gave us a safe space on hospital grounds.
“Once we are home from hospital, I devote as much time as possible to raising money and giving back to the charities that have supported us and our amazing boy.” The proceeds from Andrew’s run will be split equally between The Archie Foundation and the House.