About Jake's Magical Memory Makers

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Our story:

I suppose our story started when we first became a family on the 14th September 2009 when our son Jake was born, the first months went how most families believe their lives are going to go. But when Jake was 15 months old, he caught chicken pox.  Before this Jake was meeting his normal milestones and we had no concerns but after this he regressed from cruising on furniture and walking holding hands and babbling words, to crawling on his belly unable to stand and regressed with talking.

As first-time parents we were obviously worried so took Jake to the doctors to find out what was going on. We were referred straight away to a consultant at our local Children’s Development Centre.  After 3 years of tests including CT, MRI lumber puncture and only after full genome testing, we received the devastating news that Jake had mitochondrial disease.  As they believed this was not a spontaneous mutation, they recommended Steph to be tested as it could have been maternally inherited. So as a family we then received more devastating news that Steph also had a high mutation in her mitochondrial DNA. We felt very scared as we had never heard of this condition.  We did the worst thing we could do and we ‘googled’ it.  That terrified us even more.  The not knowing if our son was going to survive was the worst feeling in the world.  

However, as a family this has only made us closer and determined to live life to the full. Roll on 7 years to 2020 and during lockdown my wife Steph decided to create her own charity call Steph and Jakes My Mito Mission, this is part of the bigger charity My Mito Mission.  Her aim was to raise money and awareness for mitochondrial disease.  She didn’t think that she was going to raise much money and really doubted herself. But with the support of me and Jake and the team at My Mito Mission she has excelled at both and is now a volunteer for the main charity. During this time while working with My Mito Mission we became friends with many other families who have Mito one such family was the Regan’s family.  Regan  was so much like Jake that we called them Mito twins.  

Sadly, Jake and Regan never had the chance to meet as in February 2022 Regan tragically lost his battle with Mito aged 13. Jake and us as a family took this devastating loss very hard, one night when talking to Jake about this he was saying that he wished that he had the chance to go on holiday with Regan.  Now at this point I should say that Jake always wants to take everyone on holiday with him and has an amazing imagination and is always looking on his iPad to book holidays. Now with is in mind I asked Jake, why did he want to take him on holiday, and he said so I could have had memories of us having fun together. So, with a tear in my eye and an idea in my heart the first spark of Jakes Magical Memory Makes was born. Over the next 18 of paperwork and finding out how to start a charity Jakes Magical Memory Makers was born. With the aim to be able to send families make magical memories together, whether it’s a family photo shoot, a trip to zoo or even a magical trip to Disney we are here to try and make these magical memories happen for families suffering with mitochondrial diseases.