‘Rally Round Rupert’ : 100 mile walk across North Yorkshire to raise £100,000 for fatal children's disease - Spinal Muscular Atrophy

Rupert Mosey was born in Hovingham in 2021, and was diagnosed with SMA at just four weeks old.

Little known neuromuscular disease SMA, is the leading genetic cause of infant death and before 2016 if untreated, children were expected to live for less than two years.

Rupert's parents were told to expect a consistent decline in motor function, leading to an end to independent feeding and breathing with a life expectancy of less than 18 months.

Rupert was prescribed Zolgensma, the most expensive drug ever to be approved on the NHS. The drug was introduced in 2021 and is believed to halt the progression of the previously fatal disease.

Rupert was the second child ever to receive Zolgensma in the UK, a drug that was to extend the lives of babies born with SMA and is now achieving milestones no one thought possible.

Rupert's mother, Charlie Mosey said: “When Rupert was diagnosed, we were told he would die.”

Rupert's father, George Mosley said: “The diagnosis turned our world upside down.

“We had never heard of SMA and as well as dealing with an unwell baby, we set to work researching in order to aim to save our child’s life.

“Time is everything with SMA, as the longer the disease continues unchecked, the more irreversible the damage is done.”

SMA is a genetic neuromuscular condition that causes muscle weakness and wastage due to the loss of motor neurons. It is a degenerative disease, which if left untreated is fatal.

At 11 weeks old, Rupert was given a second chance at life. Slowly, over the coming months and with lots of hard work and support, Rupert started to gain back some parts of his movement.

He is now able to sit unassisted, stand in his gaiters and has taken his first ever unaided steps - all things his parents never thought would be possible.

Mr and Mrs Mosey have set up the charity ‘Rally Round Rupert’ in his honour, which aims to improve public understanding of SMA and to provide financial support to advance clinical research into the condition.

In July 2022, close friends and family walked 100 miles to raise £60,000 in support of Great Ormond Street Hospital and two SMA charities.

From June 23 - 25, Rupert’s friends and family will walk the entire length of the Cleveland Way in North Yorkshire, to raise £100,000 in support of this new charity.

Mrs Mosey said: “Rupert has just turned two and he is thriving.

“His amazing efforts every day inspire us to do as much as we can to raise awareness for this condition, to allow early diagnosis so other families don’t have to go through the same thing we did.”

For more information on how to donate to the cause visit: https://gofund.me/35edc6af

To follow Rupert’s story find it on instagram: @rallyroundrupert