Our Children’s Legacy: Funding Vital Research into POLG Mitochondrial Disease

Mitochondrial diseases (also known as mito) can affect any organ in the body and are estimated to affect at least 1 in 5000 people. These diseases can be devastating, often resulting in early death in childhood.

POLG mitochondrial disease affects infants, children and young adults, attacking both the brain and the liver, often causing sudden liver failure, progressive neurological decline, and uncontrollable seizures. There are currently no treatments or cure.

The Noah Jordan Foundation is a paediatric mitochondrial disease charity that funds research to develop treatments and find a cure, for rare terminal paediatric mitochondrial diseases. The charity also raises awareness of these rare diseases and supports those affected.

Noah's story

The charity was set up in memory of Noah Kenneth Ray Jordan, who was born on the 5th June 2023 at Treliske, The Royal Cornwall Hospital in Truro. He was a happy and healthy little boy, always smiling, laughing, and he adored playing with his big brother Freddie.

Noah was an otherwise healthy and happy infant until 8 months of age, when he suddenly became unwell and presented with symptoms of jaundice caused by acute liver failure.

Following admission to Treliske on the 18th February 2024, Noah was quickly transferred to the nearest paediatric specialist centre at Birmingham Children’s Hospital. As Noah continued to deteriorate, doctors diagnosed him with Alpers’ syndrome, more commonly known as POLG mitochondrial disease. The disease progressed quickly and Noah passed away one month following admission to hospital.

National Three Peaks Challenge

In memory of Noah, and all the other young children taken too soon due to mitochondrial disease, our team (Laura Smith, Valeria Di Leo, Toby King and Jon Meyrick) will be completing the National Three Peaks Challenge on 13th June 2026. This will involve climbing the tallest mountains in Scotland (Ben Nevis), England (Scafell Pike), and Wales (Snowdon), all within 24 hours. This will be a huge challenge, covering ~26 miles, over 3000 meters of ascent and driving 462 miles (all without not much sleep!).

We are aiming to raise £500 per person in our team which will directly go towards funding research into POLG mitochondrial disease and supporting families affected by the condition. Any donations will be hugely appreciated. Thank you in advance!

Laura, Valeria, Toby & Jon x