Lindsay is running the Great North Run for The Lily Foundation for Team Leo, and would love your support.

Lindsay and her Dad, Dave, have been raising funds and awareness of mitochondrial disease. This year, for Dave’s 70th birthday, rather than gifts, donations were given as part of our fundraising.

Over the next year we will be raising funds for Team Leo through different fundraising events, with Dave’s 70th birthday kicking things off, followed by the Great North Run.

A little about wonderful Leo 💙

Lindsay had the honour of providing antenatal classes to Leo’s parents, Laura & Kev.

Beautiful Leo was born on 4th January 2024 at the RVI Newcastle. He was born with a very rare form of mitochondrial disease, known in abbreviated terms as LBSL.

Laura and Kev received Leo’s 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 diagnosis left them 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.

LBSL stands for Leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation. It is a rare genetic disorder caused by mutations in the DARS2 gene, leading to impaired mitochondrial function.

Leo has a wonderful team around him providing supportive care, including specialists from Newcastle’s Highly Specialised NHS Service for Rare Mitochondrial Disorders, respiratory specialists, the CHIPS palliative care team, SALT, occupational therapists and physiotherapy.

More recently, Leo has been fitted with a feeding device so that he can receive the nutrition he needs through a tube. His vision is also severely impaired, although Laura and Kev continue to work with him on his sight through things such as light-up toys and sensory experiences.

Despite everything, Leo is a very special little boy. He loves bath time, stories and songs, responds beautifully to sounds and smells, enjoys walks in nature and by the sea, and finds sneezing very funny! His tickly spots bring plenty of laughter too.

Laura and Kev say they are nervous for Leo’s future and the potentially devastating effects of a disease for which there are currently no treatments or cures. But they also draw strength from the wonderful support of their family and friends, and from Leo himself, who brings his own unique brand of happiness and joy.

Leo has brought a lot of magic to the world, bringing out the best in the people around him.

We are joining together with Laura, Kev and everyone behind Team Leo to raise funds for The Lily Foundation, helping to fund vital mitochondrial disease research, raise awareness and support families affected by these devastating conditions.

We hope that by raising money and awareness, we can help give families like Leo’s more hope for the future.

Please donate whatever you can. Every donation, no matter how big or small, will help.

Thank you so much for your support.

The Hill Family 💙