Chesterfield mum's bid to help baby boy receive lifesaving treatment in United States

Little Marley Powell has a severe case of a very rare genetic disorder called Type 1 SMA (spinal muscular atrophy), which means he has no use of any of the muscles in his body.

Marley is unable to move his arms and legs or even sit up.

Brampton NHS worker Rebecca Bristowe has been friends with Marley’s parents, Rosie-Mae Walton and Wes Powell, for around 15 years and is determined to do all she can to help the family.

MORE: Safety concerns at 'eyesore' former Chesterfield Hotel after wall collapses onto pavement

Rebecca, 28, with another friend Lucy Pheasant, is organising a raffle to try and help raise the £25,000 which is needed for the family to travel to America for treatment.

Marley, who lives in Driffield, North Yorkshire, is currently having treatment on the NHS which sees him have injections every two weeks – but unless a massive improvement is seen soon they will be stopped after six months.

She said: “This awful disorder also affects Marley’s respiratory system. So Marley has an awful lot of machinery to help with his breathing and even help to suck the mucus when he is coughing as he cannot move it himself.

"The treatment in the USA is called Zolgensma, which has a higher chance of working.

MORE: Schoolboy's tribute to grandad and well-known Chesterfield man after his sudden death

"Rosie has spoken to people in America whose children have undergone this treatment and have seen a massive improvement.

"Without this treatment Marley has a chance of dying before his second birthday as he has the most severe case of the disorder.”

Rebecca, who has two children of her own, Isla, three, and six-month-old Joshua, says she has already been overwhelmed by support since deciding to organise a raffle in the Chesterfield area.

"We have lots of amazing people who have donated some great prizes to the raffle, however we need to sell these tickets so we can try and help in the only way we know how,” Rebecca said.

"We have many things to raffle, from vouchers for afternoon tea and aromatherapy therapy massages to beauty gift sets, hampers and gift baskets.”

For more information about the raffle, which will be held on December 18, visit the Facebook page or Marlow’s page here.

In these confusing and worrying times, local journalism is more vital than ever. Thanks to everyone who helps us ask the questions that matter by taking out a subscription or buying a paper. We stand together. Nancy Fielder, editor.