Joe is running London Landmarks Half Marathon for The Lily Foundation
Joseph Heyburn is raising money for The Lily Foundation
Story
Lillyanna's story
My niece Lillyanna hasn't had the easiest ride in life so far. Since birth she has been battling against a rare genetic disease called mitochondrial disease (mito), which she was only diagnosed with in February 2020 - 14 months after she was born.
Since that diagnosis there has been little progress in understanding how mito will affect Lillyanna. She is non-verbal, cannot walk without assistance, and is a silent aspirator; so she is fed through a gastrostomy button directly to her stomach. More recently we have been told Lilly may have an additional underlying condition - for which we have no prognosis for as yet.
Lillyanna's mum (my sister) did not return to work after her maternity leave and is now a full-time carer for her. This diagnosis came at a time when the Covid-19 pandemic hit the UK and the country went into lockdown - our family lost the opportunity for us to heal together from the diagnosis and to provide support.
There is a wonderful charity coincidentally called The Lily Foundation, named after the founder's daughter, who do amazing support work for those affected by mito - and help push for research into this unknown disease.
You can read more about Lillyanna's story here.
London Landmarks 🏃♂️
I will be running a half marathon at London Landmarks on Sunday 1st August to raise as much money as possible for this wonderful charity!
There are many unsolved questions for us and everyday we are hopeful for those answers - if not for us then for future diagnoses!
About The Lily Foundation
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.