Baby Noah leaves a 'Mity' Legacy...
Our Son Noah Kenneth Ray Jordan was born on the 5th June 2023, 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.
Something wasn't right
On the evening of the 18th February 2024, Natasha and I noticed some yellowing in his eyes which we thought could be a sign of Jaundice. As it was the weekend and the GP was closed, a call to 111 led Natasha and Noah to our local urgent care centre in St Austell, Cornwall whilst I looked after Freddie at home.
From there, due to their concerns, the medical staff immediately sent Natasha and Noah to our local hospital, Treliske, The Royal Cornwall Hospital, Truro where he was immediately admitted as an inpatient as they suspected that Noah had acute liver failure and was critically ill. They just didn't know why.
After approximately 12 hours, they decided that he needed to be taken to the nearest paediatric specialist centre for Liver Failure, which for us in the South West, is at Birmingham Children's Hospital (BCH). As a result, Noah and Natasha were blue lighted, overnight to BCH where Noah was again admitted as an inpatient on the Liver Unit. Myself and the rest of our family were given a room at the special, Ronald McDonald House in Birmingham which supports families of critically ill children whom are away from home for extended periods whilst they receive care.
After approximately ten days and a variety of specialist tests, Noah was still deteriorating rapidly and they still didn't know what was causing it. He had to stop breast feeding as he was extremely ill. He was reliant on a central line into a large vein in his neck to provide medication; and an NG tube into his nose to provide fluids. It wasn't until he started having uncontrollable seizures, developed hypoglycaemia and had to be admitted to the Paediatric intensive care unit (PICU) that Mitochondrial Disease was mentioned.
Devastating News
On the morning of the 1st March 2024, one of the Consultants took Natasha and I into a small room where she broke the devastating news that no parent should have to hear, that Noah was going to die and that there was nothing they could do. Through genetic blood test results, they had established that Noah had an incredibly rare terminal paediatric mitochondrial disease called Alpers Huttenlocher Syndrome (AHS) that attacks the liver and brain and for which there is currently no treatments or cure. This led us to having to make the incredibly heartbreaking choice to move Noah's care to palliative.
The Consultants also explained that due to the genetic nature of these diseases, that there was a 25% chance of any sibling also developing the disease. Thankfully though, following testing, this was found not to be the case for our older Son Freddie.
This disease, particularly prevalent in infants and children is incredibly progressive and we were told it was likely that Noah would not have long.
Noah's Final Days
Our family's wishes were to spend the little time that we had left with Noah at an appropriate children's hospice. By this time of his diagnosis, the long journey back to our Cornwall home was not possible as he was too ill. Instead, Natasha and I found a place for care for Noah at the incredible Alexander Devine Children’s Hospice in Berkshire near to where Natasha's family home is.
With the support of numerous specialist departments supporting Noah’s care, the multi disciplinary team put a plan in place to safely transfer him to the children’s hospice for his final days. Natasha and medical practitioners from Birmingham Children’s Hospital travelled with him in the ambulance, to keep him safe for the one-and-a-half-hour journey, to ensure he did not deteriorate on route.
The Alexander Devine Hospice is an incredibly special place. The kind and compassionate staff not only made sure Noah was as comfortable as possible at all times, but provided our family with the opportunity with the limited time we had left with him to make memories; spending time with him in the swimming pool, in music therapy and other activities with family and close friends.
Noah died peacefully in our arms on the 19th March 2024.
Thank you
We are a small Charity set up from our home in Cornwall following the death of our beloved Son Noah.
We would not have been able to achieve this without the incredible support of our family, close friends and the wider community; for which we are eternally grateful.
We'd like to thank the medical staff at Birmingham Children's Hospital who provided Noah's care whilst he was critically ill, showing compassion and professionalism throughout.
We'd like to thank Ronald McDonald House Birmingham for providing our family with somewhere to stay whilst Noah was critically ill, which without their support would have made our journey infinitely more difficult.
We'd like to thank Alexander Devine Children's Hospice for the care and compassion they showed Noah and our family in his final days, it means more than we can put into words.
We’d also like the thank the Lily Foundation, the UK’s leading mitochondrial disease charity for their support and the work that they are continuing to do, as without this, we would have almost certainly not received a diagnosis for Noah which ultimately facilitated the inception of our charity.
We just wish to say thank you to all those people now, and others in the future, who will help drive Noah's legacy forward in the hope that other children in the future will not have to suffer as he did.
Thank you for your continued support.
Ben, Natasha & Freddie x
The Noah Jordan Foundation funds research to develop treatments and find a cure, for rare terminal paediatric mitochondrial diseases. The charity also raises awareness of these rare diseases and supports those affected.
Our Noah
