Bailey Pahl, 25, and Alex Pahl, 23, pictured with their oldest two sons Elijah (4) and Landon (2).
Bailey Pahl, 25, and Alex Pahl, 23, pictured with their oldest two sons Elijah (4) and Landon (2).
The parents of a 2-year-old boy with a rare terminal condition want to raise awareness in the hope a cure can be found – although for their son, it will likely come too late.
Landon Pahl had just turned 2 when he was diagnosed with infantile neuroaxonal dystrophy (INAD), agenetic neurological disorder that means he won’t live beyond his 10th birthday.
“We were in the hospital before his birthday because over Christmas, he was sort of walking along, [using the furniture as a support] and then he stopped doing that, so they were a bit concerned by that and they took him in for a CT,” his mum Alex Pahl tells the Herald.
Pahl, 23, works in early childhood education, while her husband Bailey, 25, has a farming background.
Based in Ngāruawāhia, they are also parents to Elijah, 4, and Lewis, 1.
Just a few weeks after celebrating Landon’s birthday in March this year, they were faced with the news of an incurable diagnosis.
Scans showed Landon’s cerebellum was a lot smaller than is normal in children his age, leading specialists to think he might have mitochondrial disease – but genetic testing showed that wasn’t the case.
“[That] gave us a bit of hope... he might actually be all right, he’ll just need a bit of extra help,” Pahl remembers thinking.
After meeting with a neurologist at Starship children’s hospital, she and her husband got an urgent call to see Landon’s paediatrician.
Landon Pahl, 2, has been diagnosed with infantile neuroaxonal dystrophy. Photo / Capturing Moments
“That’s when we both went ‘Okay, that’s not good’... so we went in and then they said that he had INAD.”
Pahl already knew a little bit about the disorder.
“I followed someone on TikTok whose two children died of it a couple of years ago – which was crazy, that I was already following her – so when I heard that, I knew exactly what it meant.”
Landon’s life expectancy is about 10 years or less.
“He’ll just slowly lose everything. He’s just recently lost his crawling, and he’s not that far off not being able to sit independently anymore,” his mum explains.
“It’s kind of like childhood Alzheimer’s and he’s just going to keep going backwards until he passes, so he’ll lose pretty much all independence. I would give him maybe until this time next year before he’s completely bedridden.”
Despite this, Pahl says her boy is “one of the happiest kids you’ll ever meet”.
“He doesn’t know any different. This is his normal life, and we are really lucky that he doesn’t get frustrated with his lack of movement, because he still goes to daycare and he loves it.
“It’s probably his favourite thing, going to daycare, and they have been absolutely fantastic with him.
“They’ve set him up his own little area with activities that he can do without having to exhaust himself. He doesn’t have that comprehension of, ‘Something’s wrong with me, what’s happening, why can they do that and I can’t do that?’
“Which is very much a blessing in disguise, that he doesn’t have that understanding.”
Pahl and her husband have explained to their oldest boy Elijah what Landon’s diagnosis means.
Bailey Pahl, 25, and Alex Pahl, 23, are parents to sons Elijah, 4, Landon, 2, and Lewis, 1.
“We’ve always been very open with him – he knows that his brother’s sick and that he is going to die.
“He obviously doesn’t quite understand the timeframe of things or the logistics around it, but he knows that he doesn’t walk, he can’t talk, he won’t ever be able to do those things.
“If he has questions, we will answer them... and then when he asks us to stop, we stop because sometimes he gets quite upset about it.
“But he’s been fantastic with Landon, he’s so gentle and kind with him. [Elijah] does go to kindy, he sees other kids with siblings.
“He’s always known that Landon was a bit different because he wasn’t doing what his friends’ brothers or sisters were doing.”
There is no treatment or cure for INAD, so all that can be done for Landon is treating his symptoms as they progress.
The INAD Cure Foundation, a privately funded charity based in the US, is supporting work on a gene replacement therapy to treat the disorder.
The treatment is awaiting FDA funding to take it to clinical trials, which means it’s unlikely to become available within Landon’s lifetime.
“It’s important, though, for future kids [with INAD]. The more awareness that we can bring from around the world, the more funding that the foundation can get to be able to help more children,” Pahl says.
“For us moving forward, we have a one in four chance of having kids with it, because both parents have to have the gene in order to pass it down, which is what makes it so rare.”
“We were going to do it next year, but we’ve decided that it’s probably best to do the overseas stuff as soon as we can before Landon starts becoming more medically complex and requires medications and tube feeding, just to kind of lower the stress of being in another country.
“It’s for the other boys more than anything, to have those memories with Landon, rather than just the memories of him being sick.”
As well as helping to make precious memories, funds raised through the Givealittle will help cover the time taken off work to care for Landon.
“When he was in hospital, I drained all of my annual leave and sick leave,” Pahl says.
“So as much as it is covering trips and memories, if he’s sick and in hospital, or if RSV or something is going around daycare and I need to take time off to keep him away, then having that security to be able to cover wages would be massive.”
Through it all, she and her husband feel lucky to have the support of their family and close friends around them, with each of their parents just 10 minutes away in Hamilton.
“We have the biggest village and I don’t think we would be surviving without it, to be completely honest,” she shares.
“Both of our workplaces have been fantastic, and we have some really close friends who have been nothing but supportive with the boys.”
