Six-year-old Alder doesn’t miss a thing. He likes finding out fun new facts and is an expert at spotting the hidden long dogs in his favourite cartoon Bluey!
Alder’s grandma Sally - who he affectionately calls Gaga – says despite his complex health issues, he’s a bright, tenacious kid.
Alder was born at 35 weeks with short bowel syndrome which means his intestines never formed properly.
Scans during pregnancy had showed that Alder’s intestines were growing outside of his stomach but usually after birth, the intestines will ‘go back’ into the abdominal cavity.
Sadly, Alder had a rare case where the hole in his abdomen closed over so he lost most of his intestines that had formed outside of his body. He was immediately transferred to Neonatal Intensive Care (NICU) for urgent treatment.
He remained in intensive care for five weeks while his Mum, Sophie; Dad, Josh; and the rest of the family tried to process the shock and grief. He had major abdominal surgery at seven months old where doctors ‘joined up’ the intestines that were inside his body.
In total, it would be 15 long months before Alder was well enough to go home from hospital for the first time.
Since then, he has experienced long-term complications and has an intravenous feeding tube to maintain adequate nutrition levels. Hospital remains part of his life.
“The amount of medical stuff Alder puts up with is astounding for a child his age. Yet he’s still so chatty and loves telling a good story. His brain is always going – he’s a busy kid who’s curious and loves to learn,” his grandma Sally said.
Alder has monthly hospital appointments for bloods tests, iron infusions and clinic appointments. Managing his food intake is a massive job – Sally makes up batches of different pureed foods so they’re always prepared- and this is on top of managing Alder’s day to day medical needs and hospital admissions.
“We’re constantly monitoring, checking and planning ahead - not living on the fly,” she explains.
While hospital has been part of Alder’s life since day one, so has Starlight.
Alder’s mum, Sophie fondly remembers Captain Starlight singing Somewhere over the Rainbow to Alder when he was in NICU when he was only days old, and when he had his first birthday in the Starlight Express Room.
“It’s so good for Alder to have Captain Starlight and the Starlight Express Room. Starlight creates a sense of belonging for Alder - we need that in life,” she said.
Alder will likely need further complex surgery in the future and Sally says knowing Starlight will be there makes all the difference.
“There’s no pushback from Alder about going to hospital and that’s because of the fun he has in the Starlight Express Room - it’s the whole reason he thinks we’re going.”
Alder loves Bluey and Paw Patrol and has recently got into drawing, colouring and reading books. He loves doing craft in the Starlight Express Room that he can then take home as a special souvenir.
But the Starlight Express Room isn’t just for kids. Sally describes it as a place to ‘sit back and take a breath’ away from the stress of hospital.
Alder’s family is so thankful to Starlight supporters.
“We can’t thank you enough. Starlight has been part of Alder’s journey and as he’s got older, he has more of an understanding of what’s going on and that he’s different. But for him, hospital is still a fun place to go where the Captain Starlights always remember him and he feels like he belongs there. We can’t imagine hospital without it.”
