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Campaign Summary

POLG mitochondrial disease is a devastating condition that is prevalent in infants and children, attacking both the brain and the liver, and for which there are currently no treatments or cure.

Thanks to your incredible support, we have already funded a three-year medical research PhD at the Mitochondrial Research Group at Newcastle University, which began in September 2025. Established in memory of Noah and in honour of all the children we have lost, this research is focused on understanding how this cruel disease affects the brain.

However, the disease’s effect on the liver, and what triggers its sudden and often catastrophic failure, remains poorly understood. For many children, liver failure is the first sign of the condition.

To continue our children’s legacy, we are now raising funds for a second three-year medical research PhD dedicated to better understanding why POLG mitochondrial disease causes liver failure.

This new PhD will work alongside our existing funded researcher, Elsaed Mohamed, building on the progress already underway at Newcastle University. The research is supervised by Professor Robert McFarland, one of the UK’s leading specialists in Paediatric Mitochondrial Medicine, and his team at the Mitochondrial Research Group (MRG), including Dr Laura Smith, a neuroscientist specialising in POLG mitochondrial disease, who, along with Professor McFarland, serves as a medical advisor to our charity.

Together we hope to accelerate understanding of this devastating condition, bring us closer to effective treatments, and ultimately, one day, a cure.

By donating today, you will help drive vital medical research forward and support a brighter future for children living with mitochondrial disease.

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 in Truro, the second son of myself and my wife Natasha Jordan. 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.

This devastating disease attacks both the liver and the brain, often causing sudden liver failure, progressive neurological decline, and uncontrollable seizures. Mitochondrial disease is believed to affect around 1 in 5,000 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 our 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.

Turning Heartbreak into Hope

When Noah died, we made him a promise that we would have an impact on this devastating disease for other children in the future and we will not let him down.

With the incredible support of friends, family, and people across the UK and around the world, we successfully raised £100,000 in just seven months following the launch of The Noah Jordan Foundation in September 2024. This funded a three-year medical research PhD into POLG mitochondrial disease, focused on better understanding how the disease affects the brain. The research officially began in September 2025 at the Mitochondrial Research Group, Newcastle University, one of the world’s leading centres for mitochondrial medicine.

This research was funded not only in Noah’s memory but also in loving memory of other children taken by POLG mitochondrial disease, including Kit Baddeley and Sophia Moloney. Their families, like ours, have ensured that this vital research will be a shared legacy for all children affected by this cruel disease.

We are incredibly proud that research is now underway in their names. With the support of other families, we hold onto the hope that understanding, treatments, and ultimately a cure for POLG mitochondrial disease may one day be possible.

Help Us Raise £100,000 To Fund Groundbreaking Liver Research

While our first PhD focuses on understanding how POLG mitochondrial disease affects the brain, one of the most devastating and least understood aspects of the condition is sudden and catastrophic liver failure, which for many children is the first sign that something is terribly wrong.

To continue Noah’s legacy and the legacies of other children taken by this disease, we are now raising £100,000 to fund a second three-year PhD dedicated to uncovering why POLG mitochondrial disease attacks the liver. This research has never been done before and could be critical to developing earlier diagnosis, potential treatments, and ultimately a cure.

The new PhD student will work alongside our current fully funded researcher, Elsaed Mohamed, building on the work already underway at Newcastle University. The research will be supervised by Professor Robert McFarland, the UK’s leading Professor of Paediatric Mitochondrial Medicine, and his team at the Mitochondrial Research Group, including Dr Laura Smith, a neuroscientist specialising in POLG mitochondrial disease. Both serve as our charity’s medical advisors.

Together, this research aims to accelerate understanding of this devastating disease and bring hope for children and families affected by mitochondrial disease.

Every donation, no matter the size, helps us move closer to a brighter future where children are no longer affected by this cruel disease.

Why Your Support Matters

Your support is helping to fund groundbreaking research that has never been done before, giving hope to children and families facing POLG mitochondrial disease.

Every contribution plays a vital role in reaching our £100,000 target and funding this three-year PhD, making this critical research possible.

This is more than a fundraising goal. It is a chance to change the future for children who are told there is no treatment and no cure.

Every pound brings us closer to answers. Every donation gives children a fighting chance and a future filled with hope.

Thank You

When Noah died, we made a promise that his life would leave a lasting legacy, and with your support, that promise is being kept.

We couldn’t save Noah, but with your support we hope his legacy will help save other children in the future.

Every donation, every share, and every act of support brings hope to families who are told there is no treatment and no cure for their child.

Your generosity fuels groundbreaking research, gives children a fighting chance, and transforms heartbreak into hope.

From the bottom of our hearts, thank you for believing in our mission and helping us fight for a brighter future for other children as part of Noah's legacy.

Ben, Natasha, Freddie, Sebastian, and Noah’s community 

The Noah Jordan Foundation (RCN 1208933)