Skydive for research in NKH

Hi my name is Bailey and I’m raising money for NKH research. Please read this story to have a brief insight of my friends unfortunate experience in this genetic metabolic condition.

Tommy & His Sisters Story

So I am raising money for the research to find a cure for a rare life limiting condition called Non Ketotic Hyperglycaemia, this is close to my heart has my close friends have lost 2 little girls and have a little Boy called Tommy-boy with this condition.

Here is a little bit about that family.

So Charlie and Brad found out they was going to be parents to a baby girl in 2016 who they called Rayah. Rayah was born at 29 weeks on the 16th January 2017, due to reduced movement and when rayah was a week old they found out she had this condition. With this condition and her being premature the outlook wasn’t good and they had to make the hardest decision any parent has ever been asked to make. And that to was turn her life support off. This happened when Rayah was 2 weeks old. Bradley and Charlie was broken beyond belief.

Then in 2019 they found out they was expecting again, but at 16 weeks pregnant, a test showed that they unborn baby had this horrible condition and if was with a heavy heart that they has a couple decided that they couldn’t bring another child into the world know they was going to lose them again. So on the 24th July 2019 Remmie was born sleeping.

Skip to 2020 when they discovered they was pregnant again, they had tests early on and this indicated that the baby was 50/50 either a carrier of the gene or affected by this condition. After having long talk about this they decided to carry on with the pregnancy no matter the outcome. At 20 weeks pregnant, they was told that their baby was healthily, everything they had wished and longed for. Fast forward to the 15th July 2021 when their little boy Tommy-Boy was born weighing a healthily 6lb 12oz. But things started to take a turn for the worse when Tommy was struggling to breath and that is when they knew they had been given false information regarding their little boy. At just 15 hours old Tommy was ventalated. But Tommy was a fighter, he was given medication to help lower the build up of glycine in his brain. And at the age of 13days old he finally came off the ventilator. He opened his eyes, he started to come on leaps and bounds. At 4 weeks old he came home.

Tommy-Boy suffers everyday with this condition and there isn’t a cure for it. So I’m wanting to raise money to go towards the research and also raise awareness about this life limiting condition.

Thank you for your time in reading their story and Thank you for your donations