Hi, my name is Jess, Mother to Noah our Heart Warrior who is now a STAR in heaven ⭐️

Noah was born on the 25th December 2023 to which we then found out postnatally that he had a heart condition called Hypoplastic Left Heart Syndrome (HLHS). HLHS is an incurable condition that required a 3 stage palliative surgery series to help the right side of the heart pump blood around the body, due to the left side of the heart not developing properly and being able to pump blood around the body.

Noah at 2 days old had a stent fitted, at 2 weeks old Stage 1: 9 hours of open heart surgery where he had the Norwood procedure done. At 8 months old Stage 2: Glenn procedure which was 5 hours of open heart surgery.

In 2025, Noah developed quite a few infections which led him to becoming quite poorly again. In June 2025 we was admitted back in to Leeds Children’s Hospital, he started on a new medication which was a 14 week programme as it was quite a strong drug so had to be careful with administering it and monitoring Noah. Whilst we had a 4 month stay in hospital, Noah was transferred over to Newcastle Freemans Hospital by helicopter to have a heart transplant assessment which he was accepted on.

We managed to get back home in October 25 and had an amazing 4 months making memories with Noah, celebrating his 2nd birthday on Christmas Day, having an amazing 2nd birthday party for him and just letting him enjoy life and live it to the fullest as much as he could.

Unfortunately, in February 2026 Noah suffered a cardiac arrest at home where dad had to perform CPR, I called 999 and the ambulance service were rapid. Dad did an amazing job and we managed to get Noah back, but he was seriously ill and not stable. We managed to get him to our local hospital, where they stabilised him so we could transfer him over to Leeds General to the intensive care unit.

Noah was doing well and remained stable, he was extubated a week later but deteriorated the day after. He was intubated again and they extubated him around 10 days later and went on to an invasive mask. Unfortunately, with Noah’s heart condition being severe his body didn’t have any reserves and slowly started to struggle and deteriorate. We managed to get Noah back on to the urgent heart transplant list, but Noah would have been waiting at least another year and we knew he wouldn’t survive that long.

As parents, we had to make the difficult decision of taking him to a hospice and on the 11th March Noah sadly passed away in my arms. Our whole world had changed, our happy, smiley, loveable boy had suffered so much in his 2 years and suffered right till the end, he was so strong throughout and always had a smile on his face, like he wasn’t going through anything. Our whole life has changed forever and one I will never heal from.

As our strong warrior beat the odds from the day he was born and survived longer than what anyone expected him too, we want to carry on his strength, resilience, courage and determination that he showed day in day out.

As a result a team of amazing family and friends are doing the 15k tough mudder in Manchester on the 10th October to raise funds for four charities close to our hearts. These charities are: St Andrews Hospice, Martins House Hospice, The Children’s Heart Surgery Fund and Sick Children’s Trust (Eckersley House Leeds).

Tough mudder is no way near as tough as what Noah had to go through in the 2 years of his life, but I want to do something challenging to raise money in his name and in his memory as he will be our inspiration through everything we do in our lives.

Noah makes me feel inspired, feel strong and I will carry his name and his strength with me forever because he is our WARRIOR.

We would really appreciate if you could donate towards these wonderful charities who cared and look after not just us but Noah throughout his medical journey. They are all incredible and special in their own way and the money raised will help other children and families going through the same journey as us and Noah, but will also help these charities make special memories for other children.

Love Jess & Jase (Mummy and Daddy to Noah)

xx