As many of you know, my baby Otto passed away on 23 January this year from mitochondrial disease. We have been none stop fundraising to find a cure for mitochondrial disease, ever since, and this time I wanted to actually DO something to warrant the donations! I’m running the Great North Run (half marathon). I am absolutely NO runner, so please donate what you can, and read more about my darling boy below.

Otto was born healthy on the 3rd September 2022. Aged 2 weeks, we took him to hospital due to reduced feeding. Whilst there, he had seizures and was induced into a coma. Six weeks later he was diagnosed with a genetic metabolic mitochondrial condition, affecting just a handful of children worldwide.

Both of us (his parents, Millie and Tony), unknowingly carry a mutation of the LIAS gene. As Otto’s condition was rare, there was no exact prognosis. We knew that it was life limiting, but we couldn’t tell how severely Otto would be impacted. His development was promising, he had physio weekly and lived a happy life full of love. 

Aged four months, Otto’s feeding regressed, so we took him to hospital, where we were devastated and very shocked to discover that his condition had progressed and his heart started to fail. Four days later, Otto peacefully made his way to Heaven in our arms, doted on with love and kisses.

 Although rarely spoken about there are many types of mito disease, and each day a baby in the UK is born who may develop a serious form.In honour of our beautiful, brave darling Otto, we have been raising money for The Lily Foundation, the UK's leading mitochondrial disease charity. They not only offer support to mito families, but fund equipment, holidays, and vital research into this very unknown disease.

There was no cure for Otto, but we want this to change so that no other family has to say goodbye to their precious baby like we did. All money raised in Otto’s honour will be ring-fenced by the Lily Foundation for research.

The Lily Foundation are the UK's leading mitochondrial disease charity and the largest charitable funder of mitochondrial research in Europe. Their mission is to improve the lives of people affected by mitochondrial diseases, while working towards a future where mitochondrial diseases can be effectively treated or cured.

We asked Otto to come back to us in nature, so think of him and say his name when you see something beautiful like a sunrise, bee, butterfly, or wild animal.