In June this year, my brother and sister-in-law received a heart-breaking diagnosis. Their beautiful baby daughter, Charlotte Withers, was diagnosed with Leigh’s disease at the age of 18 months.

Leigh’s disease is a rare genetic Mitochondrial Disease which becomes apparent in the first year of life. Devastatingly, it is a degenerative and severely life limiting condition.

The Lily Foundation is an incredible charity which gives hope and support to families affected by Mitochondrial Disease. They are committed to finding a cure for Mitochondrial Disease, through funding research and raising awareness of these rare conditions. Currently, there is no cure for the multitude of Mitochondrial Diseases that exist, yet every day a child in the UK is born with this cruel disease. 

Already the Lily Foundation have had a huge impact on Charlotte’s care, helping to fund the installation of a hot tub which will give Charlotte daily access to hydrotherapy. They are also funding my brother and sister-in-law to attend a families weekend where they have access to experts in the field, who can talk through the latest research and offer insights into her condition and how to support her. 

It is with a very heavy heart that I share this story. Charlotte is a beautiful child who has been deprived of a very bright future. 

My aim is to raise funds for the Lily Foundation on her behalf through several fundraising events, in order to support their goals and enable others to have a more hopeful outcome. I would really appreciate any donations, which will go to the Lily Foundation and help to support families in this tragic situation.

Many Thanks

Emily x