Kit’s Story

Kit was born in July 2023 and in Easter 2024 Kit became part of the Bear Cubs family at my house where I regularly played with him and got to hear his wonderfully infectious chuckle!

Kit celebrated his 1st birthday in July 2024 and days later he was unwell. After a trip to A&E he was found to have a very low blood sugar which prompted more investigations and admission. Blood tests revealed he was in acute liver failure and he was transferred to Birmingham Children’s Hospital.

His liver recovered and he made it home 3 weeks later but had become increasingly weak. Two days after discharge, Gemma & Mike had 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.

With the wonderful community nursing team and palliative care consultant, they managed to keep Kit at home, happy and comfortable which also gave them time to make some wonderful memories as a family that they will treasure forever. Kit passed away peacefully on 15th September 2024 with his Mummy & Daddy by his side.

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 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