On the 25^th July 2022 Our beautiful baby boy Ellis passed away surrounded by family.

Ellis had a very rare condition called citrullinemia which is a urea cycle disorder. 

Something the consultants and doctors had never seen before. Ellis couldn’t get rid of urine himself so this caused his body to fill up with ammonia which led to him not being able to feed, always vomiting, constantly asleep, not much movement, having seizures, to him not breathing on his own and then eventually caused him to lose his life.

Even though he was so perfect on the outside we had no idea what was happening on the inside. The chances of this happening are 1 in 75,000 and sadly it happened to us, which just shows how special he really is. He did us so proud the 5 short days he was here despite everything he was going through and now we just want to make him proud.

All of the staff at James Cook hospital did absolutely everything they could do, no one ever left his side and he had everyone running around after him because so many people cared for Ellis. Dr Skeath the consultant who also looked after Ellis will always have a place in our hearts as he worked all hours to look after Ellis and he was the one who identified what the problem was after so many tests. He did not give up and I know that it was very hard for him when Ellis passed but he did everything he could. After dropping to his knees infront of me and apologising that there was nothing more they could do just made me realise how much Ellis had touched the lives of many.

Ellis left his mark on many people, he was such a special little boy and he will never be forgotten by anyone.

We have decided to host a charity event on the 24^thMarch 2023 in aid of the Neonatal Ward at James Cook. The help, compassion, support and After Care provided by the staff and all people surrounding us during this difficult time cannot not be put into words.

It’s important to us to raise donations and funds for this amazing ward as we feel as though we owe a lot to them and I don’t think they get appreciated enough for the amazing job that they do. They deserve a lot in return for what they did for us, so any donation would be massively appreciated to hopefully one day having the answers and the medication to maybe help babies in the future who may have the same condition as Ellis. 

Thank you in advance for your generosity

Danny and Shauna