My nephew Kit was born in July 2023. He was a much loved younger brother to Alice and a longed for second child for Gemma and Mike. He was the most amazing little boy, he simply loved life; people, animals and music and was always so incredibly happy.

We celebrated Kit’s 1st birthday in July 2024 and 2 days later he was unwell with vomiting and was sleepy. In A&E they discovered he had a low blood sugar which prompted investigations and admission. They discovered he had acute liver failure and he was transferred to Birmingham Children’s Hospital the next morning.

Although his liver recovered, 2 days after discharge Gemma and Mike were told the devastating news that Kit had POLG related mitochondrial disorder (Alper’s Disease in his case). There is no cure and given his age and presentation, he was likely to deteriorate rapidly. They were referred to palliative care.

Thanks to the wonderful community nursing team and the palliative care consultant, Gemma and Mike managed to keep Kit at home, happy and comfortable. Kit passed away peacefully on 15/09/2024.

We plan to honour Kit’s memory by raising money for, and awareness of mitochondrial disease which affects more than 1 in 5000 people and for which there is no known cure.

On 22nd December - the winter solstice, I am going to ride my bike for 200km to raise money for The Lily Foundation, 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.

Please donate anything that you can; we hope to help find a cure and spread awareness of such an unknown and underfunded condition and to use Kit’s legacy for something positive.