Watch a report by ITV News Anglia's Rob Setchell
The mother of a seven-year old from Norwich who has a rare muscle-wasting condition is calling for more support from the government for people with the disease.
People with Muscular Dystrophy have been particularly hard hit by the pandemic, with the struggle to access specialist care pushing some families to the brink.
Issac Davis needs regular treatment to help his movement and frequent health check-ups - care that his mum Lauren has struggled to access during the pandemic.
The Government's pumped millions into helping the NHS beat the Covid backlog - but lots of other families feel the same torment. 70 thousand people live with muscle wasting conditions in the UK.
One charity - Muscular Dystrophy UK - found that 75 per cent of families had vital clinical appointments disrupted by Covid.
In Isaac's case, it affects most aspects of his life. He has a wheelchair for when he gets tired.
He's on a special diet and every time he needs a drink, it has to be thickened so it doesn't get into his lungs and cause infections.
Specialist physio and hydrotherapy sessions can help - online appointments often can't.
Isaac and his family were among those shielding last year - like lots of people in lockdown he got into gardening.
But he's desperate to be able to do more. To enjoy some of the activities his friends take for granted. And to do that he needs that regular access to specialist care.