UPDATE: On 7th September 2025, Andrea, Emma, Jack and Jill are taking part in the Great North Run to raise funds for Leo. These lovely people work at Digitalab, where Leo's Grandpa (Jeff) also works. We are so grateful for their support and look forward to cheering them on when the special day arrives. Stay tuned for updates!

All about Leo

Our beautiful son Leo was born on the 4th January 2024 at the RVI Newcastle. He was born with a very rare form of mitochondrial disease, known in abbreviated terms as LBSL. We received this diagnosis in the very early days of his life, when doctors sought to explain an unusually high lactate score on a routine blood test. His subsequent diagnosis left us feeling extremely sad and confused, not least because Leo appeared to be a healthy newborn baby. Since then, Leo has shown little progress in terms of his development and his medical needs have become increasingly complex. Leo is also severely visually impaired.

We are nervous for Leo’s future and the potentially devastating effects of this disease – a disease for which there are no treatments or cures. We draw strength from the wonderful support of our family and friends and from Leo himself, who brings his own unique brand of happiness and joy. Our longer term goals for Leo are less about milestones and much more about comfort and quality of life. To achieve these goals, we ideally need the help of others, including experts in the fields of occupational therapy, physiotherapy and osteopathy. Paying privately means we can access these services at a greater frequency and intensity to those provided on the NHS. Any money donated to this page will help us to help Leo, and for that we are incredibly grateful.

Alongside this page, we will continue to work hard to raise money and awareness for ‘mito’ charities such as The Lily Foundation and The Noah Jordan Foundation.

With so much love and thanks

Laura and Kev x