A COUPLE’S lives changed for ever when their son was diagnosed with a life-limiting condition that affects only five other children in the world.

Maxwell Smith, seven, is the only youngster in the UK with TK2-related mitochondrial myopathy depletion, which causes muscle weakness.

He became ill at nine months old, firstly with tonsillitis, which he was treated for in hospital.

He had a nasal gastric tube inserted into his stomach for feeding. But at one stage Maxwell choked and his lungs were filled with milk.

The aspiration and the infection activated mitochondrial disorder and 70 per cent of his muscles switched off instantly.

Maxwell lives with his parents and sister in Worthing.

His father Peter, 45, a gardener, said: “Maxwell loves going to the beach and playing at the park with his little sister Amariaah, who is three.

“His TK2d has also weakened the muscles which control his eyes, severely affecting his vision.

“He can’t chew or swallow or talk and he can’t breathe without a ventilator. Maxwell is totally dependent on others.

“We are all about family and we try to stay positive regardless of how difficult things are.

“Amariaah always says ‘we need to help my big boy’.

“Maxwell is my angel and I will do everything I can for him.

“My motto is don’t moan and to keep moving forward.

“When my wife Emma and I found out about Maxwell’s condition we said we would do our best for him.”

The little boy is taking part in a medical trial which aims to help children with this condition.

However, the medical bills are costly.

The family needs £30,000 for the trial and other expenses include £35,000 for a hydrotherapy pool, £7,000 for private physio and £20,000 for a lie-flat powered wheelchair.

Close family friend Peter Russell took part in the 10k event at the Brighton Marathon at the weekend to raise money for Maxwell’s medical expenses. He doesn’t yet know how much he has raised.

Anyone who would like to support the family is urged to go to ourmaxwell.org.