Running in memory of Noah

This month was a very poignant one for a Rutland father who should have been taking on one of the most iconic marathons in the world, in memory of his son who was “the cheekiest baby you could ever meet, who made everyone smile”.

Noah Reynolds died in October 2015, he was 15-months-old. Noah was five months old when he was diagnosed with Spinal Muscular Atrophy (SMA); a genetic muscle weakening disorder which is currently incurable and 80% of babies with SMA Type1 die before their first birthday. 

Last year his dad, Edward, pledged to raise £3,000 for us after we cared for him by running the London Marathon. And the postponement of the event has made him more determined to smash his target.

“Noah was one of the happiest babies you could ever hope to meet,” he said. “He had the most beautiful big brown eyes, crazy hair and the cheekiest smile you will ever see. 

“Noah was such a fighter. Although he became progressively weaker, he remained healthy enough to stay at home with us, where my wife Robyn and I cared for him. Every day of his life, he was happy and he brought such joy into our lives and to all those who met him.

“Throughout Noah’s illness friends and family were amazing, however we also received incredible support from the Diana Nurses, ACT for SMA and Rainbows.

“Rainbows is the most incredible place. Somehow they manage to not only to provide amazing care and support for children and for those who love them most, but they also bring joy and happiness into their lives as well. 

“Our family will never forget the good times we had at Rainbows, the laughter we had with Noah in the sensory room and the fun we had together in the swimming pool.

“Rainbows is the East Midlands’ only hospice for children and young people. They are there for children and for families, like ours, when they need help the most. But Rainbows can’t do their work without fundraisers supporting them.”

Jenny Perry, Community Fundraiser at Rainbows, said: “We can’t thank Edward enough for lacing up his trainers and taking on the London Marathon in support of us and in memory of Noah. Noah really was such an inspiration and this is a wonderful thing to do to honour his memory. 

“We rely on our supporters at Rainbows to enable us to provide care for children like Noah and we hope Edward’s story inspires people to get involved with Rainbows, particularly during these times when events have been cancelled and fundraising is more difficult.”

To sponsor Edward, visit