This page is to raise money for The Lily Foundation, a charity that supports the fight against Mitochondrial disease.

On 21st January 2015, we sadly lost our beautiful and darling son, Kian. He was so perfect, a happy little boy who until 2015, had lived a perfectly healthy life. In January 2015, he suddenly became very ill and we were admitted from Musgrove Park Hospital to The Bristol Children's Hospital.  Whilst we were there, doctors and nurses fought and saved his life on two occasions. He was then put onto a life support machine and underwent so many tests and procedures. Despite this, he was so brave.

Mitochondrial Disease has been in the news recently for positive reasons, thanks to millions of pounds spent on research. The news has also highlighted that there is no cure for this disease, so there was no option for us and Kian, other than to switch off the life support machine and let him go. Kian proved to be a fighter and continued to breathe for 16 hours after they took out the tube. This allowed us to spend just one more day with our darling Kian doing normal things. We were able to bathe him and snuggle up in bed with him for one last time. Kian sadly passed away at 6am in our arms.

Please help my partner, Nick and I, raise money for The Lily Foundation, so we can help other parents who are in the situation that we were and maybe one day we can find a cure for this awful disease. Any money will go directly to them to support parents and their sick children. What could be a better cause than that?  

If you would like more information on the condition, please visit The Lily Foundation's website http://www.thelilyfoundation.org.uk/

Thank you for all your support

Jodi Fancy & Nick Musk

"......of all the special gifts in life, however great or small, to have you as our son was the greatest gift of all. A special time, a special place, a special son we cant replace. With an aching heart we whisper low, we love you son and miss you so ..."