The harrowing struggle for family with two children who have rare disorders

Around 300,000 Kiwis live with a rare disorder, and they will be the focus of Rare Disorders Month which begins in March.  

There is often insufficient information and support for patients and their families. 

From the outside, Lachlan Peck looks like a typical 9-year-old Kiwi kid, roaring around his front yard on his trike - but on the inside, he’s battling a rare chromosomal disorder. 

"There are 180 symptoms to his condition – from the heart, speech, immune system, missing kidneys, there’s a huge wide range of things," his mum Alanna Peck said. 

Soon after Lachlan was born, his parents realised that something wasn't quite right, so they went looking for answers. 

When he was 15 months old, they were told he was deaf.  

Two years later, his deafness was found to be part of a wider diagnosis of the rare condition 22 Q Deletion syndrome.   

"He struggles with a lot of things at school, and it's been very hard to get him support at school," Alanna said.  

"Because he's so happy people think he gets it, but he doesn't comprehend like children his age."

Lachlan is one of four children.  

His older sister Chloe is also now battling a rare disorder, following an accident at school in 2021 when she hit her head, developing chronic pain syndrome. 

"She was not treated with the care she deserved and was told it was all in her head and to get over it and get back to school." 

"'There's nothing wrong with you,' they said. At this stage, she was losing the ability to walk, and we were just dumbfounded."

With their daughter fast losing weight, their local GP referred them to Starship Hospital. 

But the Pecks said a specialist then stepped in. 

"They said it wasn't warranted, we just need to wait it out, get on with it." 

But put simply, their daughter couldn't. Chloe was in agony and lost her ability to walk, and the hospital became home. 

The mental and financial burden was huge.  

Alanna had to quit her job to support the kids, and their Ashburton house was mortgaged to pay for home medical modifications. 

"Initially, Chloe was allocated one hour of physio a fortnight," Alanna said.  

"That's all she was entitled to through ACC. 

"I couldn't receive care or support because Chloe was a child so I should have been at home with her anyway, it's degrading comments like that from agencies that are not helpful at all. 

"It's hard... on some days even getting out of bed is difficult...."   

The Pecks eventually sought help for Chloe in Sydney at the Advance Rehab Centre (ARC), at a cost of nearly $50,000.  

It was initially successful but on return, she got COVID-19 and rapidly went downhill. 

"The last five months have been really tough, any kind of virus stresses her body out horrifically. If her pain was managed, half her condition would disappear overnight. But her pain has been up for the past five months and over the last three weeks she’s had more than 200 seizures, which means one of us must be with her all the time," Alanna said.

The family said it's torture and that's taken a toll on Mum. 

"At the moment I'm suffering from Bell's Palsy and I’m completely deaf in one ear, it's all stress," she said. 

The Pecks aren't alone. It's estimated about 300,000 Kiwis live with a rare disorder. And there are about 7000 different disorders considered rare - some are incredibly hard to diagnose and treat. 

This has prompted Rare Disorders Month, which is now being marked in New Zealand, to provide hope and support. 

"What we have been campaigning for is for a centre of expertise in New Zealand so that there is somewhere for a GP and other clinicians to refer somebody to so they can accelerate that diagnosis," said Chris Higgins, CEO of Rare Disorders New Zealand. 

The Ministry of Health said it's working on a strategy, which can't come soon enough for Alanna Peck and her kids. 

As for Lachlan, he's still loving life. 

"He's very ambitious – he's got six jobs he wants to do in the future – looking after mum is one of them," said Alanna. 

And with that comment, she smiles openly, a brief respite in a long tough road.