When Riley Paxton, a space-mad youngster who has spent most of his life in and out of hospital, met astronaut Tim Peake, it was a moment that was truly out of this world.
“Riley’s actual wish was go to the moon but when he realised we might struggle to make that happen the next best thing was to meet a real life astronaut,” says his mum Rachel.
“So when he met Tim Peake he was over the moon. With everything else he’s got to contend with Riley also suffers from anxiety and the whole experience has helped a lot with that.
“Even now when he’s struggling with his illness or feelings of anxiety he’ll reflect back on the day his dream came true to take his mind off the problems of the here and now.
“We couldn’t have asked for a more amazing experience.”
Riley’s dream day came about with the help of Make-A-Wish UK, this year’s Mirror Christmas Appeal charity, an organisation mum-of-two Rachel, 27, says has offered a ray of hope to the family during some of their most difficult times.
“To have time away from what can feel like quite traumatic experiences makes a huge difference,” she says.
Riley, now seven, was born prematurely at 32 weeks in September 2014 weighing 3lbs 8oz.
“Nothing was picked up during my pregnancy but once I was in labour Riley went into foetal distress and was delivered by emergency C-section,” recalls Rachel, from Newcastle.
“Virtually as soon as he was born his journey with one surgery after another began. He had his first operation at just a few hours old.”
Riley was diagnosed with TOF/OA, two rare conditions that meant he was born with a gap in his oesophagus. Surgery quickly after delivery meant mum Rachel and dad David, 32, couldn’t kiss him for the first two days of his life. It was four days before they had their first cuddle.
“It was terrifying from the beginning,” recalls Rachel. “Even though he had surgery straight away, it was weeks before the gap in his oesophagus was repaired and all that time he was in intensive care.”
Riley was allowed home aged seven months old. By then the tot had also been diagnosed with a range of other health problems, including hemivertebra, a congenital condition which means parts of his spine are not properly developed.
He also has dextrocardia which means his heart is slightly to the left of where it should be and he has suffered from respiratory illnesses over the years.
“He’s had a tough time,” says Rachel. “But he’s such a lovely boy.” The family’s challenges don’t stop there however, with Riley’s little sister Ruby-Leigh, five, also born with TOF/OA. Both youngsters were even hospitalised at the same time.
“Nothing was flagged during the pregnancy with Ruby-Leigh either,” says Rachel. “Over the years she’s had multiple surgeries on her oesophagus too.
“They both go to mainstream school but it’s difficult, and particularly at this time of year. Very often one of both of them will end up with a respiratory illness as they have tracheomalacia, or a floppy airway, so even a common cold can end up with a chest infection that could lead to pneumonia.”
Which is why the experience provided for Riley by Make-A-Wish in January 2020 made such an impact.
“I can’t put into words just what help they’ve given us,” says Rachel, who along with partner David is a full-time carer for her children.
“Even now we talk about meeting Tim. Make-A-Wish gave us tickets to see him on stage in October and he gave Riley a shout-out. We can’t thank Tim and the charity enough.”
Now hopeful that little Ruby-Leigh is also eligible for a wish, Rachel, who dreams of becoming a nurse one day, hopes there might be even more special memories around the corner.
“The wishes they grant make an impact far beyond the day they happen. They’re things families like ours truly treasure for a long time.”
