To celebrate the memory of Kit, a much-loved member of the Bear Cubs family, we are holding a fund raising event. As many of you know, last year, we sadly lost Kit to mitochondrial disease. Kit was a wonderful, happy little boy and we want to honour his memory whilst helping other families facing this heartbreaking condition.

To do this, we have organised a sponsored Great Honey Run with the children who were part of the Bear Cubs family with Kit. We will be encouraging the children to dress up as bees and buzz around the garden to raise funds. The children will take part in a fun filled afternoon with a bee themed picnic followed by our bee themed obstacle course, collecting pollen as they go! Please donate anything you can for their efforts, let's use Kit’s legacy for something positive. Mitochondrial disease affects more than 1 in 5000 people and is a life-limiting condition with no known cure, but research and support services can make a real difference to families affected by it.

On the same day we will honour Kit’s memory by finishing ‘Kit’s Garden’ as a lasting reminder of his love for nature and a way for us to continue supporting the wildlife he adored as a constant reminder of him. We will involve the children with the planting, painting stones and putting a bird house up on the wall. We have chosen special bee-friendly plants in his honour – Kit loved bees, he would often “bzzzzzz” for us when he saw bee pictures!

Thank you for being part of this with us, your kindness and support mean so much.

Marie & Gail

Kit’s Story

Kit was born in July 2023 and in Easter 2024 Gemma & Mike gave us the privilege of welcoming him into the Bear Cubs family along with his big sister Alice. Kit was a happy sociable little boy who loved being around the other children, smiling at anyone that looked at him!

We celebrated Kit’s 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 (RCN 1208933)

Website: www.tnjf.org.uk

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Email: contact@thenoahjordanfoundation.org.uk