Our beautiful little boy Noah lost his battle to Leighs Disease on 10th September 2020 at 2 years old.

Noah was an amazing character with a huge heart that suffered for far longer than we knew in his brave and incredible battle with this horrible disease but with more fight than we ever knew possible he carried on with an unwavering enthusiasm for every day.

On the 6th June 2018 our beautiful little Noah Bear was born into the world with such chubby cheeks and enormous feet! The first year with Noah was like any other baby, he met all his milestones and enjoyed all things apart from one thing ......... SLEEP!!!

Moving into the second year, Noah started with occurring ear infections and sickness and it was after constant trips to A&E that we were convinced that something just didnt feel right. The doctors agreed to conduct a MRI scan and found some small changes in Noahs brain.

Fast forward two months, we were assigned to a specialist metabolic team who were concerned it could possibly be some form of mitochondrial disease, something we had never even heard of.

23rd June 2020

This is the day that literally turned our world upside down.

We were told Noah has Leighs disease (complex 1 deficiency). As you can imagine this was such a terrifying shock knowing that our beautiful boy will most likely not pass the age of 2, especially at the time of diagnosis you would honestly think he was a healthy young boy.

10th August 2020

Noah started to struggle with laboured breathing and became unwell very quickly. He was rushed to hospital and a decision was made to put him on a ventilator. He was then transferred to Birmingham childrens hospital, a few days later we were told Noah had developed sepsis. A month went on by and the doctors had attempted to get Noah off the ventilator numerous times but unfortunately he was too weak.

At this moment we had to make the hardest decision any parent could make and that was to take our little boy of life support. On the 10th September 2020 our little boy fell to sleep in our arms.

He has left a huge hole in all of our familys and friends lives but he taught us so much in his short time and one of the main things is to never take life for granted.

Without Liz and the Lily Foundation team we would of been lost and we honestly cant thank them enough.

We have set up this page to try to raise money to support the research to treat and hopefully one day cure this horrible disease and to stop parents from having to live this nightmare in the future.

Thank you for taking the time to read this.

love Phil & Maddy x