Kit was born in July 2023. He was a much loved younger brother to Alice and a longed for second child for Mike and Gemma. From the minute he was born, he was simply beautiful. As his little personality developed, we realised his beauty was both inside and out. He simply loved life; people, animals (particularly bees 🐝 and giraffes 🦒), music, “dancing” and gave THE BEST cuddles. He lit up every day with his smile and we couldn’t believe how lucky we were to have him.

We celebrated Kit’s 1st birthday in July 2024 and 2 days later he was unwell with vomiting and was sleepy. We took him to A&E to find he had a very low blood sugar which prompted more investigations and admission. Blood tests revealed he was in acute liver failure and we were transferred to Birmingham Children’s Hospital the next morning.

His liver recovered and we made it home 3 weeks later but Kit had become increasingly weak and we knew something was terribly wrong. Two days after discharge, we were called into a meeting with the metabolic and neurology team to be given 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 very rapidly. We were referred to palliative care.

Thanks to the wonderful community nursing team and our palliative care consultant, we managed to keep Kit at home, happy and comfortable. We made some wonderful memories as a family and will treasure these forever. Kit passed away peacefully on 15/09/2024 with us lying next to him.

Kit has left a void in our lives which can never be filled. We will think of him every day and be grateful that we got to love him for an all too brief 14 months 🐝 . 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.

In honour of our gorgeous, brave boy, we are raising 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.

The Lily Foundation was founded in Lily's memory, having lost her battle to Mitochondrial Disease at just eight months old. The charity aims to give hope, answers and support to the many other children and families that face the challenges of this disease today.

Please donate anything and all 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.