Hayley’s friend Emma, her son Henry was born on 16th June 2021 at a very healthy 8lb 5oz! It had been a long labour, resulting in Henry being born with an infection via caesarean. Emma and Jon had no idea that this would be the start of a very difficult journey with Henry. 

Initially Henry was in the MK Hospital’s Neonatal Unit until his infection cleared up. When the infection was under control but he was still having problems with his breathing, further investigation was required. It was discovered that Henry had a problem with one of his vocal cords that was causing his breathing issues. When he was
a week old, Henry had a bad episode which resulted in him being put on a ventilator and taken to the John Radcliffe Hospital in Oxford for further care.

Here it was discovered that both his vocal cords weren’t working properly (bilateral vocal cord palsy) and at 5 weeks old Henry had a tracheostomy which would allow him to breath properly. Though Emma and Jon were worried, there was no reason to suspect that Henry wouldn’t lead a full and rich life and they couldn’t wait to go home and start their family life together.

Unfortunately this wasn’t meant to be, the tracheostomy didn’t solve Henry’s breathing issues and it was noticed that Henry wasn’t moving his arms and legs very much anymore. After more tests, Emma & Jon were told that Henry had a neuromuscular condition for which there is no cure, they just now needed to find out which one.

Blood was taken for genetic testing, a CT scan and further tests to check Henry’s muscular responses resulted in the news no parent should every have to hear. Henry’s brain stem was shutting down and there wasn’t anything the doctors could do.

All Emma & Jon knew was that they didn’t have very long with their precious little boy. Henry passed away a week and a half later on 16th August 2021, he was exactly 2 months old.

It was after Henry died that the genetic tests came back. He had 2 misspellings in his OPA1 gene which affected his mitochondrial function - this is the power station of nearly every cell in our body and supplies our bodies with the energy it needs to function. Mitochondrial Disease is more common than you think - every twenty minutes a
child is born who will develop a Mitochondrial Disease disease by the age of 16. There is no cure and for many it is debilitating and life limiting. 

Hayley and I have recently completed the Bournemouth the half marathon by training and running together. We are going to be doing the same again,  supporting each other every step of the way so we can complete the London marathon together. 

The Lily Foundation was founded in Lily's memory, having lost her battle to Mitochondrial Disease at just eight months old. The charity aims to give hope, answers and support to the many other children and families that face the challenges of this disease today.Did you know every twenty minutes a child is born who will develop Mitochondrial Disease by the age of 16! There is no cure for this disease which is for many, debilitating and life limiting.Please stand with us and fight Mitochondrial Disease and fight for hope.