Remembering Noah

Organised by The Noah Jordan Foundation

As part of Noah's legacy we are raising £100,000 to fund vital medical research towards treatments and a cure for mitochondrial diseases including Alpers Huttenlocher Syndrome. Please donate or take on your own challenge in Noah's memory.

Story

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, Truro, the second Son of myself and my wife Natasha Jordan. He was a happy and healthy little boy; he was always smiling, laughing and loved playing with his big brother Freddie.

Noah was an otherwise healthy and happy infant up until 8 months of age, when he presented with symptoms of jaundice as a result of acute liver failure. Following admission to Treliske on the 18th February 2024, he was quickly transferred to the nearest paediatric specialist centre at Birmingham Children's Hospital where following neurological progression a diagnosis of a rare Mitochondrial disease was obtained, namely, Alpers-Huttenlocher Syndrome. Mitochondrial disease is believed to affect 1 in 5000 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 his 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.

Help us raise £100,000 to fund vital medical research towards treatments and a cure

As part of Noah's legacy we are raising £100,000 to fund vital medical research into Alper's Huttenlocher Syndrome, the disease that took Noah’s life. This crucial medical research will be facilitated through a three-year PHD under the guidance of our charity medical advisors, the UK’s leading Professor of Paediatric Mitochondrial Medicine, Professor Robert McFarland and Dr Laura Smith, a leading Neuroscientist with a special interest in Alper’s Syndrome. By supporting our campaign, you are helping us raise vital funds to undertake this crucial medical research, with their guidance, as soon as possible.

Noah's story in full (written) https://www.tnjf.org.uk/noah-s-story

Noah's story (video) https://www.instagram.com/reel/DATPcHBIKnD/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA==

BBC News (Article): https://www.bbc.co.uk/news/articles/c4gdxr18nqlo

BBC News (Radio): https://www.instagram.com/reel/DBwfM3WOlaR/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA==

BBC News (Television): https://www.instagram.com/reel/DBrTLzVu-tg/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA==