Noah's Grandad Mike undertakes the Great North Swim

Mike Jordan is raising money for The Noah Jordan Foundation

In memory of Noah Jordan

Story

Noah's Grandad Mike undertakes the Great North Swim in his memory.

Our Grandson Noah Kenneth Ray Jordan was born on the 5th June 2023 at Treliske, The Royal Cornwall Hospital, Truro, my second grandson and son of my son Ben, and his wife Natasha. 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 our family at an incredible Paediatric Children’s Hospice in Berkshire called ‘Alexander Devine’ where he sadly passed away.

Noah died peacefully in Ben and Natasha's arms on the 19th March 2024.

The Great North Swim

This June, to honour Noah and in his memory, I am challenging myself to complete the Great North Swim, a one mile swim in Lake Windemere along with my Son Ben and five of our family and friends.

I hope to raise £1 for every 1 of the 1760 yards I will Swim.

This is to help the foundation raise £100,000, as part of Noah's legacy, 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 the 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 me, as part of this campaign, you are helping us raise vital funds to undertake this crucial medical research, with their guidance, as soon as possible.