Cornwall dad Ben Jordan’s promise to son Noah earns hero award

Ben Jordan made his son a promise. He would spend the rest of his life fighting the disease that took Noah, aged just nine months.

More than £500,000 later, that promise has been recognised. Ben, founder of The Noah Jordan Foundation, has been named Fundraising Hero at the Cornwall’s Heroes Awards, which celebrate people who make a difference to communities across Cornwall.

A little boy who was always smiling

Noah Kenneth Ray Jordan was born on 5 June 2023 at Treliske, the Royal Cornwall Hospital in Truro. He was the second son of Ben and his wife Natasha, a happy and healthy baby who loved playing with his big brother, Freddie.

On the evening of 18 February 2024, Ben and Natasha noticed some yellowing in Noah’s eyes. It was the weekend, so a call to 111 sent Natasha and Noah from the family home in Tywardreath to the urgent care centre in St Austell. Staff there sent them straight on to Treliske, where doctors suspected acute liver failure. Noah was critically ill, and nobody knew why.

About twelve hours later he was blue lighted overnight to Birmingham Children’s Hospital, the nearest specialist paediatric liver centre for the South West. The family stayed at Ronald McDonald House in Birmingham while he was treated.

After around ten days of tests, Noah was still deteriorating. He needed a central line in his neck for medication and an NG tube for fluids. Only when he began having uncontrollable seizures, developed hypoglycaemia and was moved to paediatric intensive care was mitochondrial disease mentioned.

No treatment and no cure

On 1 March 2024, a consultant took Ben and Natasha into a small room and told them Noah was going to die. Genetic blood tests showed he had Alpers-Huttenlocher Syndrome, a very rare terminal paediatric mitochondrial disease affecting the POLG gene. Known as POLG mitochondrial disease, it attacks the liver and brain. There is currently no treatment and no cure.

Noah’s care moved to palliative. Because of the genetic nature of the disease, there was a 25% chance a sibling could also be affected. Testing showed Freddie was not.

Noah was too ill to make the journey home to Cornwall, so he was transferred to Alexander Devine Children’s Hospice in Berkshire, near Natasha’s family home. There the family made what memories they could, in the swimming pool, in music therapy and with close friends and family.

Noah died peacefully in his parents’ arms on 19 March 2024, one month and a day after he was first admitted to hospital.

More than £500,000 raised

Since then the family have turned their grief into a mission. The charity has three aims: to fund medical research, raise awareness and support children and families affected by paediatric mitochondrial disease.

It is funding a three-year PhD studentship at Newcastle University investigating neurological dysfunction in POLG mitochondrial disease. A second PhD project is due to begin in January 2027, focusing on liver dysfunction in children with POLG-related mitochondrial disease.

Alongside the research, the Foundation works to improve public understanding of these conditions and to help families reach support such as counselling, respite and information about caring for a child with mitochondrial disease.

“I will not let him down”

For the family, the award belongs to the supporters, fundraisers, volunteers and partners who have stood with them.

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 would be his legacy, and I will not let him down.

“We know what it feels like to be told there is no treatment and no cure for your child. We know why research cannot wait.

“We cannot change what happened to Noah, but we can work towards a future where other families benefit from advances in research, greater awareness and the support they need. Every donation, every fundraising event and every person who supports the Foundation brings us another step closer to making that happen.

“This award means an enormous amount, but everything we have achieved has been possible because of the people who have stood beside us. I’m incredibly grateful to everyone helping us keep the promise I made to Noah.”