A GLOBAL campaign to raise awareness of mitochondrial disease will see Truro Cathedral join world landmarks in being illuminated green from 8pm on Saturday, September 19.

The cathedral will be lit up during Mitochondrial Disease Awareness Week, in a powerful display of solidarity with the thousands of children and adults living with the condition and the families who support them.

As part of Light Up for Mito, The Noah Jordan Foundation (TNFJ) team will be at Truro Cathedral from 4.30pm, giving visitors the opportunity to find out more about mitochondrial disease, the work of the foundation and how they can support families affected by these devastating conditions.

Noah was taken ill in February 2024 at the age of nine months. His mother, Natasha, took to hospital in St Austell having noticed some yellowing in his eyes; he was quickly referred to the Royal Cornwall Hospital in Truro and admitted on suspicion of acute liver failure.

Deteriorating rapidly, he was transferred to the Liver Unit at Birmingham Children's Hospital (BCH), where doctors diagnosed Alpers Huttenlocher Syndrome (AHS) - a rare terminal paediatric mitochondrial disease that attacks the liver and brain. There is currently no treatment or cure, so Noah's care was moved to palliative, and he died peacefully on March 19, 2024.

Noah’s father, Ben, said: “When Noah died, I made him a promise that the impact I would have on these diseases in my lifetime, for other children and families, would be his legacy, and I will not let him down. By sharing his story, we hope to raise greater awareness of mitochondrial disease, fund vital medical research and support children and families affected by these devastating diseases.”

TNFJ will also light up the Millennium Bridge in Newcastle, where the charity is funding a three-year medical research PhD focused on better understanding POLG mitochondrial disease.