Mum fears for son, 7, with life-limiting rare disease as hospital appointments cancelled in coronavirus crisis – The Sun

A DESPERATE mother has revealed her seven-year-old boy with a life-limiting disease is suffering in pain after his hospital appointments were cancelled due to Covid-19.

The mum-of-two is urging the public to stay at home so that the lockdown can end faster and the NHS “can get back to treating the people who rely on it”.

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Shelley Simmonds, 40, from Billericay, Essex, said she feels helpless as her son Fraser, who has a rare genetic condition, is suffering with his custom splints “cutting into his feet and leaving red sores”.

Fraser's specialist appointments to try a new walking frame and to get new parts for his wheelchair to keep his spine straight have been cancelled because of Covid-19.

The young boy suffers from Duchenne Muscular Dystrophy, which causes severe muscle weakness – he has never been able to walk.

It affects around 2,500 people in the UK, most of whom are boys and have an average life expectancy of 30 years.

Mrs Simmonds said: “He has been unable to see his physiotherapist to try out a new walking frame that we had been discussing and also cannot receive some new parts that need to be fitted to his wheelchair which will help with keeping his spine straight.

“Two other appointments cancelled are his six monthly heart scans and endocrinology at Great Ormond Street. These are a critical part of his care.”

The less people contracting the virus and using the NHS means the NHS can get back to providing the care and support to people like Fraser who rely on it to be able to live their everyday lives.

The company secretary said that Fraser uses a walking frame every day to exercise his muscles and has custom made splits to enable him to stand and use the walking frame – however these are now too small and are cutting his feet.

Mrs Simmonds said she is concerned people do not understand the reality for vulnerable people who rely on the NHS, and pleaded with Brits to “stay at home and think of others more vulnerable than them”.

She said: “The less people contracting the virus and using the NHS means the NHS can get back to providing the care and support to people like Fraser who rely on it to be able to live their everyday lives.”


Her call comes as the government has announced that the coronavirus lockdown will continue until May 3 at the earliest.

The seven-year-old’s illness has been a lifelong struggle which started when he was just six-months-old after his Mrs Simmonds started to have concerns with his physical development.

She said he couldn't sit up, roll over, or crawl, and when he was on his tummy he couldn't push himself up using his arms.

After seeing a paediatrician, Fraser was diagnosed with muscular dystrophy at Great Ormond Street at just 11 months old.

Following a muscle biopsy and numerous genetic blood tests, the family found out he had Duchenne, the most severe muscular dystrophy, in September 2014 when he was 18 months old.

The little boy got his first wheelchair at two-years-old and his first powered wheelchair aged four.

Mrs Simmonds said: “He needs to be carried upstairs at home…lifted to the table to eat dinner, help with personal care and needs someone else to just open a packet of crisps.”


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The concerned mother said coronavirus and those flouting the lockdown advice could seriously impact Fraser’s condition.

On the Facebook page Mrs Simmonds created to educate people about Duchenne and disability, she shared the emotional message: “There is no treatment available for me at the moment so my life depends on receiving the best care and support from the NHS.

“It is recommended that I see my specialist clinical team at Great Ormond Street Hospital every 6 months – my last appointment was in October 2019. As well as checking my muscles that you can see, they also check that my heart is beating properly and that my lungs are functioning enough to keep my breathing stable.”


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