100km for Robin

We are a group of ten friends raising funds in memory of Robin. We would hugely appreciate any donation you are able to make to support the Myotubular Trust.

Robin was a perfect, happy little boy who made the most out of life. He was born in October 2018 and like many boys with myotubular myopathy (MTM) his entry into the world was very difficult. He did not take his first breath for nine minutes and spent the next nine months in hospital. He had very limited muscle strength and movement of his limbs. He was dependent on a ventilator for breathing and a jejunostomy tube for feeding.

None of this stopped Robin. From the minute he first opened his eyes he enjoyed everything he could about the world. His favourite things were stories, animals, studying his toys for hours and playing with his family. He was so determined and managed to find the strength to sit for short periods. He also had a small wheelchair called a Wizzybug and loved speeding around the house and bumping into furniture.

Robin’s life was cut short just before his third birthday. He simply couldn’t escape this condition. For his memory and for other families affected we are raising funds for the Myotubular Trust. The charity is tiny but does a huge amount. It has raised funds to make major advances in research and provides invaluable support and guidance to families. There is a video here which explains more about the condition and the charity’s work: https://myotubulartrust.org/about/our-story-in-film/

The challenge itself is a 10km dash around Carsington Water in mid-Feb. Given most of the group have not run since school, you can be assured this is a genuine effort and is going to feel like a very long way.