Fletcher was a healthy and happy child. When he was around 8 years old I (Fletcher's mum) noticed a regression in his skills. Symptoms we noticed were extreme lethargy and slurred speech. Fletcher was unable to jump, run or walk distances. He had some big falls where he couldn't catch or stop his self.

Fletcher's physio referred him to his doctor who immediately had her suspicions as to what was going on. The diagnosis of Leigh’s Syndrome was a massive shock to the whole family. Since then, Fletcher's condition has progressed he has dystonia caused by his mito. He uses a wheelchair most of the time.

The diagnosis really turned our world upside down and we just take life day by day.

Watching the disease take over parts of his body has been so hard however Fletcher seems to take it all in his stride. Fletcher is a happy, funny, game loving, caring and amazing little boy that has a heart of gold. Fletcher has a wicked sense of humour and is always making us laugh or roasting us.

Mitochondrial disease is a devastating disease, and it makes you grieve for a life for someone who's still here.

The life you imagined your child living is no longer the one they'll lead.

Lots of families are in the same position as us and Fletcher or they have unfortunately lost someone to Mitochondrial Disease.

Either way we need to fundraise as much as we can to put into research to help find a cure and carry hope in our hearts that everyday we're closer to a cure we're closer to help and treatments.

Thank you for reading our story and please if you can donate or maybe hold your own fundraising event or take on your own challenge to help us help The Lily Foundation.

Love from

Danielle, Harley, Fletcher, Olivia and our family xx