Please take a moment to read the story of Kit, my cousin Michael and his wife Gemma’s beautiful baby boy:

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 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. Mike and Gemma 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 they were transferred to Birmingham Children's Hospital the next morning. His liver recovered and they made it home 3 weeks later but Kit had become increasingly weak and we knew something was terribly wrong. Two days after discharge, they 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. They were referred to palliative care.

Thanks to the fantastic 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 at home with Mike and Gemma.

Kit has left a void in our lives which can never be filled. We will think of him every day and are 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. For those affected with this disease, every day is an uphill battle. Research is limited and there is no known cure. Support is desperately needed!

So in honour of Kit, I will be swimming, cycling, running and crawling through an an Ironman in France on June 22nd. Any donation is greatly appreciated from me and this amazing family.

Thank you!

Jon X

The Noah Jordan Foundation funds research, to develop treatments and find a cure, for rare terminal Paediatric Mitochondrial Diseases. The Charity also raises awareness of these rare diseases and supports those affected.

The Noah Jordan Foundation (RCN 1208933)

Website: www.tnjf.org.uk

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Email: contact@thenoahjordanfoundation.org.uk