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17th Oct, 2021

Bromsgrove parents open up about son's battle with rare neuromuscular disease

Harry Leach 2nd Feb, 2021

THE head of PE at North Bromsgrove High School has opened up about his son’s battle with Spinal Muscular Atrophy (SMA).

Benjamin Stanford is on a mission to raise awareness about Fletcher’s rare neuromuscular disease in hope of encouraging change.

To do this, Mr Stanford and partner Adele have set up an Instagram page – @fletcherlivingwithsma – to share their son’s story.

Aston Fields toddler Fletcher was diagnosed with SMA in October last year and will need to use a wheelchair for the rest of his life.

“Adele posts lots of pictures and videos online with the hope of sharing Fletcher’s story and raising awareness of this devastating disease,” said Mr Stanford.

“When Fletcher was diagnosed he started treatment of a drug called nusinersen which had only been approved by NICE and NHS England in 2019.

“It is the only treatment of its kind in the UK.

“We looked to find others who were living with SMA in the UK and particular type 2, but soon realised very few people knew about it.

“We want to share his story everywhere, raise awareness of SMA and hopefully encourage change.”

Utilising social media is just one of the ways Mr Stanford aims to raise awareness.

The 29-year-old will also cycle from John O’ Groats to Lands’ End in July, a total of 910 miles, in seven days to raise funds for Fletcher.

The cash will be used to make sure Fletcher has the best possible quality of life.

You can donate by visiting http://www.justgiving.com/crowdfunding/fletcherlivingwithsma

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