26/09/2024

On Sunday, 22nd September, we came together for this year’s Manchester Hope Walk. Despite the pouring rain, we completed a 10K walk along the Bridgewater Canal banks in Manchester, united in hope for a brighter future for all affected by Myotubular Myopathy. So far, we’ve raised an incredible £3,045!

In 2021, at just 9 months old, Noah, Kate Arco’s director son, tragically passed away, surrounded by love. He was born with a rare genetic condition called Myotubular Myopathy—a life-limiting disease that brings immense physical and emotional challenges. However, with the unwavering support and guidance from the Myotubular Myopathy Trust, Noah’s family found the strength to keep fighting, despite the heartbreaking outcome.

The tireless dedication of this incredible charity, both to supporting families and to their ongoing search for a cure, makes them truly special. Having lived through this experience, it is Noah’s family’s heartfelt wish that no one else should endure the immense pain and suffering of losing a beloved child, son, grandson, nephew, or friend.

To learn more about Myotubular Myopathy, visit: https://myotubulartrust.org/