The parents of an eight-month-old baby son, who died earlier this year from a rare condition, are turning their heartbreak into action by launching a charity in his memory. 

Noah Jordan from Parr, Cornwall passed away in March after he was diagnosed with a rare type of paediatric mitochondrial disease, a disorder which attacks the liver and brain, causing them to fail.

Noah’s parents Natasha and Ben noticed yellowness in his eyes and thought it may have been jaundice. They decided to get him checked out, even though he was his usual self.  

Noah’s father Ben Jordan said: “He went from being a happy, healthy eight-month-old boy to being critically ill, within 24 hours.

“It was the start of the weekend when my wife Natasha and I spotted yellowness in his eyes, so we called 111 for what we thought was possibly jaundice and were directed to the nearest urgent care centre.

"They then sent us to the local hospital in Truro where they promptly identified that Noah was critically ill with acute liver failure, but they didn’t know why.

"As a result, he was blue-lighted to Birmingham Children's Hospital where he was admitted into the specialist liver unit.”

Within hours, it became apparent to the medical team that Noah was critically ill with acute liver failure.

He was quickly transferred by ambulance to Birmingham Children’s Hospital, the nearest specialist paediatric centre, where following neurological progression and genetic-based blood tests, was found to have a rare type of paediatric mitochondrial disease, a disorder which attacks the liver and brain, causing them to fail.

By the time the diagnosis was made a few weeks later, with the progressive nature of this disease, Noah continued to deteriorate rapidly. This left the doctors with the task of delivering the devastating news that Noah was going to die and there was no treatment or cure.

"On 1st March this year, only two weeks after noticing the yellowness in Noah’s eyes, we were told that due to the progressive nature of this disease, he was going to die and that there were no available treatments or cure,” said Ben.

He passed away in his parent’s arms on March 19.

In honour of Noah's memory, The Noah Jordan Foundation was established to fund research into his condition and similar diseases. The foundation also seeks to raise awareness among healthcare professionals and the public, as well as provide support to affected families.

The foundation's ambitious target is to raise £100,000 in its first year to fund a research fellowship focused on understanding Noah's rare condition and exploring potential clinical management strategies, treatments, and ultimately, a cure.

The foundation's distinctive logo, aptly named the "Mitosaur," was designed by family friend and illustrator Tobias Hall. Inspired by Noah's older brother Freddie's love of dinosaurs, the logo creatively combines the shape of a dinosaur with the outline of a mitochondrion.

The Noah Jordan Foundation's slogan, "The extinction of Mito, one stomp at a time,"

For more information on The Noah Jordan Foundation charity visit https://www.tnjf.org.uk/.

Mitochondrial disease, often referred to as ‘Mito’ affects as many as 1 in 5000 children. While the disease is relatively uncommon, POLG research could have a much broader impact in areas including Parkinson’s disease and ageing.