Watching our boys, Darcy, three, and Henley, one, zoom their trucks around the living room, I couldn’t help but smile.
Working as a nurse and midwife, I loved helping women birth their children into the world. So when my husband, Sean, and I were blessed with our two kids, we were over the moon.
Darcy was a doting big brother from the start, always fetching his favourite toys to share with Henley.
With his almond-shaped eyes and flat little nose, Henley was our little cherub. But when we took him to our local GP for a check-up at four months, she said something that stopped me in my tracks.
‘He’s got funny little features, doesn’t he?’ she commented.
I was taken aback.
Still, I had noticed Henley had been struggling to sit up in recent weeks and he was often quite floppy.
The doctors I’d seen previously had said he was just behind in his physical development and wanted to monitor his progress with regular appointments.
But now I wondered whether it could be a sign of something more sinister.
Deciding we wanted a second opinion, we met with another paediatrician, who recommended Henley have genetic testing carried out.
Thankfully, the results came back fine.
But around eight months later, when Henley was one, he developed a high fever, so we rushed him to hospital.
There, doctors noted that Henley had a hernia and his head was measuring quite large, so they suggested he undergo tests to rule out any serious disorders.
This time, the results were abnormal.
They indicated mucopolysaccharidosis (MPS) – a condition where the enzyme that helps to break down sugar molecules in the body is missing, causing swelling in the heart, lungs, brain, bones and connective tissue.
They wanted to do another round of tests to be sure.
Back home, we googled the condition to find out more. That’s when we discovered that kids diagnosed with MPS likely wouldn’t reach adulthood.
What if he never gets to go to school or kick a footy with his brother? I thought, breaking down.
Still, we were determined to stay strong for our family until we knew for sure.
It was another five agonising weeks before his doctor phoned and explained the test had revealed even more abnormal results.
‘Henley might not live for as long as we’d hoped,’ she said.
Though she couldn’t be sure Henley had MPS, the doctor recommended he be taken to Westmead Children’s Hospital in Sydney right away.
There, we met with specialists to get to the bottom of Henley’s issues.
In March this year, we finally got the diagnosis we’d been dreading. Henley had mucopolysaccharidosis type 1 (MPS1).
Devastated, we learned that the rare disorder was passed on to him through genes carried by both Sean and me. With no cure, he likely wouldn’t live past 10.
‘How am I meant to live without my son?’ I cried.
Though the boys were too young to understand exactly what Henley’s diagnosis meant, they could tell something wasn’t right.
‘Do you need a bandaid?’ Darcy asked me one day when he saw me crying.
Trying to keep things as normal as possible for them, we squeezed in days at the park where we could.
Over the next two months, we travelled back and forth to Sydney with the help of Little Wings – a not-for-profit organisation flying sick kids and their families from regional NSW to the city to receive treatment.
It meant Henley could undergo enzyme replacement therapy to help his body break down sugars before undergoing a bone marrow transplant.
Though it wouldn’t cure him, it would be his best chance at slowing the condition down.
Sadly, since Sean and I carried the gene, we couldn’t donate, but when Darcy was revealed as a match, we knew he’d want to help.
‘Henley needs some of your blood,’ we gently explained to Darcy.
Without hesitation, he happily agreed.
In June, our brave boy donated part of his bone marrow from his tailbone to help save his little brother.
‘You’re our superhero,’ we told Darcy afterwards.
Incredibly, he didn’t shed a single tear and as soon as he saw Henley he gave him a big kiss.
Now, almost two months on, Darcy, three, and Henley, 20 months, are doing well.
Doctors hope the transplant will help Henley make it into his 20s. Plus, it will give our brave boy a better quality of life.
For now, we’ve learned to celebrate the little things.
Due to his immunity being suppressed, Henley has to stay in hospital for a few months, so we appealed to anyone who wanted to send colourful drawings to help brighten up his room.
Mail flooded in from kind strangers and we love watching his face light up when he opens each one.
My mum also set up a GoFundMe to help cover costs while Sean and I are unable to work, and we have been blown away by people’s generosity.
Although we don’t know what the future holds, we’re confident that as long as our Darcy is by Henley’s side, he’ll tackle anything.
After all, that’s what being a big brother is all about.
To donate, search GoFundMe for ‘A helping hand for Henley’ and follow ‘Henley’s Mission’ on Facebook.
