THE extraordinary legacy of a little boy from Cornwall, who died aged just nine months, has been recognised at the BBC Radio Cornwall Make a Difference Awards.

Ben Jordan received the Fundraising Award on behalf of The Noah Jordan Foundation, the charity established in his son’s memory following Noah’s death in March 2024 from POLG mitochondrial disease, a devastating condition that attacks the liver and brain and for which there is currently no treatment or cure.

Since its formation, Ben and his family from Tywardreath, near St Austell, have worked tirelessly to ensure that Noah’s short life continues to make a difference, raising funds for mitochondrial disease research, supporting families and campaigning to improve understanding of a devastating and often little-understood condition.

At the heart of everything is a promise Ben made to Noah that the impact he would have on these diseases in his lifetime for other children would become his little boy’s legacy.

In just two years, the foundation has raised more than £500,000, fully funded a three-year medical research PhD to better understand POLG mitochondrial disease, and built a growing community determined to fight for a brighter future for children and families affected by these devastating conditions.

The award recognises the remarkable fundraising effort behind the foundation and the growing community of people, businesses and organisations who have come together to support its work.

Speaking after receiving the award, Ben said: “It is incredibly humbling, and both an honour and a privilege, to receive this award on behalf of The Noah Jordan Foundation. But this award does not belong to me.

“It belongs to my wonderful family and friends who helped me establish the charity; our incredible volunteers; every individual supporter and business that has helped make the foundation what it is today; and, of course, our extraordinary community in Cornwall and around the UK. Without them, quite frankly, we would not have achieved what we have.”

“Most importantly, this award recognises the promise I made to my little boy when he died and I will not let him down. Whilst £500,000 is an extraordinary milestone to reach, what matters is the impact this allows us to continue to have as a charity, funding research and supporting families with counselling or respite breaks, for example, which they may otherwise not have had access to.”

“Winning this award shows the impact Noah’s life continues to have, and I couldn’t be prouder of him. This is for him, and for every other child who has died or whose life has been affected by mitochondrial disease.”

What began with one family’s promise to a little boy from Cornwall has grown into a movement of volunteers, supporters, fundraisers, researchers and businesses across Cornwall and beyond.

For The Noah Jordan Foundation, the award is another important moment in ensuring Noah’s name, his story and the promise made to him continues to make a difference for other children.

To help continue Noah’s legacy and support the foundation’s work, donations can be made at: www.tnjf.org.uk/donate