The parents of a little boy who suffers from a rare life-limiting condition are campaigning to buy a new piece of equipment that will help him to communicate.
Six-year-old Maxwell Smith suffers from a similar condition to that of baby Charlie Gard who died last year after being at the centre of a legal battle over his care which captured the world’s attention.
Maxwell, who lives with his family in Thakeham, was nine months old when doctors discovered he was suffering from mitochondrial depletion syndrome. The life-limiting condition means he needs 24-hour life support.
Maxwell had previously grown as ‘a perfect baby boy.’ His life-limiting condition was revealed following tests after he was admitted to hospital with tonsillitis and choked on some milk.
Doctors told Maxwell’s dad Pete and mum Emma that he would never be able to breathe again without ventilation, and he is now connected to a ventilator 24 hours a day for the rest of his life.
Both Emma and Pete gave up their jobs to care for Maxwell and raised money to convert a garage at Emma’s parents’ house in Thakeham into a specially adapted home for Maxwell and all the equipment necessary to keep him alive.
Maxwell now receives medication - which was last year considered unsuitable for tragic baby Charlie Gard - and has regained more movement in his little body.
Dad Pete and mum Emma are battling to raise more than £4,000 to buy an EyeGaze system which will allow Maxwell to communicate by using his eyes to activate a computer.
A fundraising grand raffle is to be drawn on Friday at Tesco in Storrington.
Pete said: “We want to say thank you to people for what they are doing to support our son.”