The family of a boy who lives with an extremely rare muscle-wasting condition have detailed how the pandemic has taken a toll on the youngsters physical and mental health.
Ethan Lane from Torquay lives with a form of muscular dystrophy, called congenital fibre type disproportion.
The 12-year-old is clinically extremely vulnerable and hasn't been able to attend school or see his friends since last year, Devon Live reports.
Ethan had to shield, however, his absence from school was initially classed as unauthorised.
He lives at home with his parents, Mel and Chris, and older sister, Jasmine.
His mum, Mel, said: “Covid-19 has changed our lives forever.
"Ethan has experienced severe psychological and physical decline because of having to shield."
In February last year, Ethan's family decided to remove him from his primary school as they were concerned for his safety.
However, despite being extremely clinically vulnerable, his absence was initially recorded as an unauthorised.
"We had to ask his children’s hospice to write a letter to Ethan’s school," explained Mel.
In September 2020, Ethan started mainstream secondary school.
However after just three weeks, he was removed again, this time on the advice of his respiratory consultant due to a positive case in the year group.
Ethan has not been able to return to school since and his family say their son's health and wellbeing has been severely impacted as a result.
"Ethan’s now being seen by a psychologist as he hasn’t seen any friends since February 2020,” said Mel.
The family also say their son's vital care and medical appointments have been hugely disrupted and that he hasn't been able to access his regular three-monthly appointments to have his spinal rods lengthened.
This week marked the government's lifting of most restrictions.
However, for the Lane family there are no signs of things returning to normal and Mel says they are living in a permanent state of fear.
“Freedom Day is making us really nervous.
"Although Ethan has had his first Covid-19 vaccine, I still don’t feel safe with him socialising as cases are rising and that causes us great fear."
The charity, Muscular Dystrophy UK, is calling on the government to improve the lives of people living with muscle-wasting conditions by taking urgent action to improve care provision.
Earlier this year, the charity conducted a survey for people living with muscle-wasting conditions.
It found that found that 68% of respondents living with a muscle-wasting condition said lockdown and shielding had a negative impact on their physical health, while 62% said it had a negative impact on their mental health.
The results also showed that 45% of people experienced reduced access to family carers or care workers and that 75% of people experienced disruption or delays to specialist appointments.
Today (July 21) Muscular Dystrophy UK is presenting the findings of the report to an All Party Parliamentary Group and calling for urgent recommendations for more joined-up health and social care.
Catherine Woodhead, CEO of Muscular Dystrophy UK, said: “Thousands of people living with a muscle-wasting condition have experienced significant deterioration in their overall wellbeing throughout the pandemic."
"It’s essential that people living with a muscle-wasting condition have access to specialist health care, regular exercise, daily essentials, care packages, family support systems and physiotherapy to lead safe and healthy lives."
"Many people living with these conditions have been unable to receive the full treatment and care they need and are at severe risk of faster progression of their conditions."
Ethan is just one of the 70,000 in the UK living with muscle-wasting conditions.
The 12-year-old's family say: "We really hope that professionals take on board the recommendations from Muscular Dystrophy UK’s report as a matter of urgency to allow for better and more joined-up care.”
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