Zach was born a perfectly healthy baby in the summer of 2013. At the beginning of 2015, Zach was diagnosed with Krabbe disease, one of over 4,000 rare childhood diseases that devastate families.
“Zach was a really chilled, happy baby,” say Lindsey and Ben, Zach’s mum and dad.
“Zach was full of life and energy, had reached all his milestones and had developed normally. He was walking, talking. He could feed himself with a spoon and fork.”
Something seriously wrong
“But within the space of a week, Zach went from walking round the furniture and crawling, to not doing anything at all. He lost all the abilities to move around. He just sat in one spot. And that’s when we knew that there was something seriously wrong.”
“It all happened so quickly. Six weeks after his first symptom he had a feeding tube fitted up his nose because he couldn’t feed properly any more.”
Getting a diagnosis was difficult but on Christmas Eve 2014 when Zach was 17 months, he had an MRI scan, and weeks later it was confirmed he had Krabbe’s.
Krabbe’s is a devastating and cruel disease. Symptoms appear like a bolt out of the blue. Children have seizures, lose sight and hearing, and suffer relentless loss of all faculties, often choking and developing an unexplained fever. Untreated, Krabbe’s is a painful and fatal condition, and most children will die within two years.
“I had never heard of Krabbe’s until that day. We didn’t take it all in. We thought, ‘it’s alright, he’ll be alright, it’ll go away, he’ll get over it’. You don’t ever think that you’re going to get told that your son is never going to be fixed or cured.”
“At the time of the MRI scan, Zach couldn’t move any more, but he still had his personality, he was still him. He changed so dramatically.
“Before Zach got poorly, our life wasn’t perfect, but it was great. We used to be such an active family. Zach went swimming, to playgroups 3 times a week, he’d love going to the deer park and feeding the deers. After he got ill, even just going out for a walk was a task. We had to take suction medicines. Oxygen. Machines that we’d never even heard of or knew existed before. Zach needed chest physio. 12 medicines a day. Sedating if he’s had a seizure.”
“Before Zach was poorly, we were parents but we became nurses, a care-giver. We tried our best to keep things normal, to be upbeat, but it was difficult.”
“You hear about rare diseases, but you don’t pay too much attention because it’s not personal to you. Until it happens to you. Had there been more research about Krabbe’s, things might have been different for Zach,” says Lindsey.
Tragically, Zach passed away in November 2015.
What we’re doing to help save children like Zach
Find out about our research project looking at rescuing brain cells in Krabbe disease: