Remembering Noah

Ben Jordan is raising money for The Noah Jordan Foundation

In memory of Noah Jordan

Story

Trekking to Everest Base Camp in memory of my Son Noah

Baby Noah leaves a 'Mity' Legacy...

Our Son Noah Kenneth Ray Jordan was born on the 5th June 2023 at Treliske, The Royal Cornwall Hospital, Truro, the second Son of myself and my wife Natasha Jordan. He was a happy and healthy little boy; he was always smiling, laughing and loved playing with his big brother Freddie.

Noah was an otherwise healthy and happy infant up until 8 months of age, when he presented with symptoms of jaundice as a result of acute liver failure. Following admission to Treliske on the 18th February 2024, he was quickly transferred to the nearest paediatric specialist centre at Birmingham Children's Hospital where following neurological progression a diagnosis of a rare Mitochondrial disease was obtained, namely, Alpers-Huttenlocher Syndrome. Mitochondrial disease is believed to affect 1 in 5000 children.

The disease progressed quickly and Noah passed away one month following admission to hospital.

This awful disease, particularly prevalent in infants and young children is incredibly progressive attacking the liver and brain; causing liver failure and uncontrollable seizures, and unbelievably there is currently no treatment or cure.

Unfortunately, Noah was not well enough to be transferred back to a Hospice near his home in Cornwall and so spent his last days surrounded by his family at an incredible Paediatric Children’s Hospice in Berkshire called ‘Alexander Devine’ where he sadly passed away.

Noah died peacefully in our arms on the 19th March 2024.

Everest Base Camp

Today sadly marks one year since we were told that that Noah had Alpers Syndrome, an incurable paediatric Mitochondrial disease for which there is currently no treatments or cure. As a result we were told he was going to die and there was nothing the medical professionals could do. He sadly died just eighteen days later, on the 19th March.

It is a privilege to announce that to honour Noah and the other children gone too soon at the hands of this cruel diseases, in October this year, along with three of my friends, I will be trekking to Everest Base Camp.

At 5,364m above sea level, I will be trekking the stairway to heaven, as part of their legacies and in their memory to raise much needed awareness and fund vital medical research.