For Junee’s Nicole and Carl Baldry, the joy of a new baby was cut tragically short.
Baby Henry, born on March 29 last year in the Wagga hospital, only survived nine days in the world.
“He was born totally fine, but overnight it was clear something was wrong, he wasn’t feeding properly,”Carl said.
When their little boy was airlifted to Sydney for an emergency heart operation, his parents still had no idea what was going on.
“We knew there was a structural fault with his heart before he was born.
“The doctor had said we should be fine and it should fix itself.”
But it was clear that wasn’t happening.
Baby Henry went into cardiac arrest, his cells unable to convert the lactic acid his body was producing into energy.
“In the hospital on Wednesday when we were told he wouldn’t make it, we spoke to a metabolic genetic specialist,” Mr Baldry said.
He was diagnosed with severe Mitochondrial Disease, or Mito.
Mito is a debilitating disease that reduces the ability of the mitochondria to produce energy.
When the mitochondria are not working properly, cells begin to die until eventually whole organ systems fail.
It can occur at birth or later in life and is progressive, with no cure. Treatment includes limiting energy use and taking a ‘vitamin cocktail’ as a supplement for older patients.
While muscular problems are a known symptom, the structural faults in Henry’s heart were atypical and still not fully understood.
Carl and Nicole had never heard of Mito, having had two healthy children before Henry. They’re now waiting on tests to determine the genetic risk for any possible future pregnancy.
While their fight to understand the condition continues, they’ve organised a festival to raise awareness of the invisible killer and raise funds for desperately needed research.
The Australian Mitochondrial Disease Foundation estimate 1 in 5000 are at risk of developing Mito, many of whom aren’t even aware of it.
“Obviously it’s a cause very close to our hearts and Henry was probably an outlier, hopefully his condition can help understand the disease further in the future,” Carl said.
All proceeds from a family fun day followed by live music and talks on October 21, 2017 at the Licorice and Chocolate Factory will be donated to AMDF.
Tickets for the Young Henry’s Indie Train can be purchased online with performances from Mollie Waters, Day Shift and James Bennett.