ONE hundred people are preparing to take on a 100-mile challenge to raise £100,000 to support a young boy and a charity helping those living with a muscle wasting condition.

Rupert Mosey was born with spinal muscular atrophy (SMA) in March 2021 - a genetic muscle wasting condition. The condition hit the news at the time as there was a £1.8 million drug called Zolgensma introduced onto the NHS which helped prevent the death of children born with the disease - and Rupert was the second child to receive the drug.

Rupert was expected to die in just 18 months, gradually losing the use of his motor functions until he was unable to breathe. But he turned two years old in March - and is hitting milestones that his parents never thought possible.

Charlie Mosey and her husband George, who was born in Hovingham, said Rupert is now "thriving".

Charlie said: "When Rupert was diagnosed, we were told he would die.

"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.”

York Press: Rupert and his family during his treatment in 2021Rupert and his family during his treatment in 2021 (Image: Supplied)

Meanwhile, George said: "Rupert's 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 damage is done.”

Rupert's parents have now 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.

This summer, George and Charlie Mosey are aiming to raise £100,000 by walking the 100 miles of the Cleveland Way in North Yorkshire with 100 people. They are already nearly half way to their target.

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

To sponsor their efforts, visit their GoFundMe page.

Zolgensma has not only extended the lives of babies born with SMA - a motor neuron disease that leads to muscle weakness, breathing problems and eventual death - but the first babies given the drug are achieving milestones that no one ever thought possible.

The earlier SMA is detected, diagnosed and treated, the better the prognosis and the
lesser the long term issues. Nine in 10 of those who have the most severe form of the disease die by the age of two if they do not receive treatment.