We share Leo's story to support 'The Noah Jordan Foundation' in the hope of raising vital funds for much needed medical research, to raise awareness and to build a community for those families with children, like ours, affected by mitochondrial disease.

Our story ...

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.

LBSL stands for Leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation. It is a rare genetic disorder that is caused by mutations in the DARS2 gene, leading to impaired mitochondrial function and the accumulation of lactate in the brain. Leo has a great team around him, including consultants within Newcastle’s Highly Specialised NHS Service for Rare Mitochondrial Disorders, respiratory specialists, the CHIPS palliative care team, SALT, occupational therapists, and physiotherapy - to name but a few. Recently, he has also been fitted with a feeding device so he can receive the nutrition he needs through a tube. This is our new ‘normal’.

Despite all of his challenges, Leo is a special little boy, who loves bath time and spending time reading stories and listening to songs. He responds well to sensory experiences involving sounds and smells, so we try to get him out for walks in nature and by the sea. Leo relies on these senses due to a severe visual impairment, but this doesn’t stop us working on his sight, with light up toys and time in an orange therapy tent. We are delighted that Leo has lots of tickly spots, so we get to hear him laugh often, and he finds sneezing a very funny thing! Leo has brought a lot of magic to the world, by bringing out the best in us and the people around us. Thank you Leo, for making us stronger, kinder, and ever more determined to make your life a happy one.

Through social media we have connected with other families who have experienced the devastating consequences of mitochondrial disease. This includes Ben & Natasha Jordan, who tragically lost their beautiful boy Noah to mitochondrial disease at just 9 months old.

In Noah's memory, Ben's family have set up the Noah Jordan Foundation, with a mission to make mito extinct, "one stomp at a time". To help raise money for the Noah Jordan Foundation, Kev is running the Great North Run. We would love for everyone who supports Team Leo to get behind this incredible cause. For Leo (and Noah), we stomp 🦖🦕