Two parents have issued a heartbreaking plea for help as their newborn is terminally ill with one of the rarest conditions in the world.
Josie and Ryan McGandy, both 32, fear that each day will be their last with baby Hallie.
The tot, aged four months, was born with a condition known as Zellweger Syndrome; which affects just one in every 50,000 newborns in the UK.
Since it’s so rare, there’s little-to-no research and so no cure.
And, sadly, most of those affected won’t make it past their first birthday.
“The thought of having to say goodbye to our beautiful girl and live without her is scary,” Josie, a remedial massage therapist, from London, told Need To Know.
“It was the worst pain when we heard what the diagnosis meant for Hallie.
“If we had been told she would have been special needs, or be medically complex, we could have easily provided the extra care.
“But to hear that we weren’t going to get the chance to share our love with her for very long was shattering.
“It was just emotional hurt when we found out; it was physical pain.
“It’s really hard to process how life can be so cruel to someone so tiny and innocent.
“She doesn’t deserve this.
“We keep questioning what we may have done wrong for life to deal us such a tough hand.”
Josie’s scans throughout pregnancy had raised some questions marks, though all common birth defects were ruled out.
She and Ryan, a HGV driver, were prepared to hear bad news following Hallie’s birth.
When she arrived, however, doctors allegedly declared her a “perfectly healthy” baby.
The following week, after a routine scan, alarm bells rang.
And, as they waited for an answer, their newborn baby only got worse.
In October 2025, it was confirmed she had Zellweger Syndrome.
Hallie struggles with her ability to breathe, as well as seizures, and has to be fed, as well as medicated, via a tube.
She also has limited hearing, low muscle tone and impaired liver function.
In most cases, it leads to toxic fat build up, as well as severe organ failure and often death.
The ticking time bomb condition is genetic; meaning both Josie and Ryan carry the gene, which could pass onto any future children.
She said: “We didn’t know we had this gene.
“We were genetically profiled to help diagnosed Hallie, so it’s a shock.
“We can’t bear the thought of losing another precious baby, so having another child naturally is not an option for us.
“There is an IVF route with special testing, but, financially, that may not be possible.
“So the future feels like it might be quite empty.”
Josie and Ryan are trying to cherish every moment they have with Hallie in case it’s her last.
But, instead, they’re on high alert 24/7 in case she makes a fast decline.
And, as a result, they’re unable to work, so their family has started a GoFundMe with the hopes to ease the financial strain, with £14,392 raised out of £25,000 so far.
Hallie is being treated with two medications daily to help calm the seizures, as well as Vitamin K to reduce internal bleeding; but that’s all medics can do.
Josie added: “We’re hoping to make as many beautiful memories with Hallie as possible, though we’re limited to what she can comfortably enjoy.
“Simple things that can be taken for granted, such as zoo trips, visits to the aquarium and mini seaside breaks are all possible now we don’t have to worry about income.
“At one stage, we were worried about how we could celebrate Hallie to her fullest when she passes.
“But now we know that we can arrange a fitting funeral for her.
“The prospect of life without her is completely devastating.
“But Hallie is a little warrior and constantly defies the rulebook of this condition.
“This week she is stable and strong and has started interacting with us.
“She loves being sung to and sings back.
“We want her to be with us as long as possible, but only while she isn’t suffering.
“Her condition shouldn’t be a painful one, so when she does have to leave us, we really hope it remains peaceful.
“Right now, though, it’s all about [the current moment with] Hallie.
“She’s a warrior, defying the odds to spend longer with us.
“So we have to devote ourselves to her, too.”
