The parents of a Sussex boy who suffers from a similar condition to that of baby Charlie Gard have urged doctors to help Charlie after their own son recently regained some movement in his little body.
Maxwell Smith was nine months old when doctors discovered he was suffering from mitochondrial depletion syndrome and - after undergoing treatment denied by the courts to Charlie - recently started to move his eyes for the first time in four years.
Dad Peter, from Thakeham, choked back tears as he told of the change in five-year-old Maxwell on the ITV programme This Morning on Monday.
Both Peter - who met baby Charlie Gard’s parents at Great Ormond Street Hospital on Fathers’ Day - and Maxwell’s mum Emma have spoken out strongly in favour of Charlie receiving experimental drug treatment available in America.
Meanwhile, their own son Maxwell - one of only six people alive in the world with the condition - is now on a ‘second generation’ of drug treatment and can wiggle his arms and legs, as well as being able to move his eyes.
“We see that he is trying to do a lot more,” said Emma. “He is vocalising more, making little sounds - it’s little improvements.”
She said Charlie Gard, whose plight has touched the hearts of the nation, as well as The Pope and US President Donald Trump, should have the same opportunity.
However, she said that Charlie had a different mutation of the syndrome for which doctors said no drug trials had yet been made on humans.
A High Court hearing will decide Charlie’s fate tomorrow.
Maxwell was diagnosed with mitochondrial depletion when he was eight months old having 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 the couple that Maxwell 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 Peter 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.
“We just take each day as it comes and we’re grateful for each day that he is with us,” said Emma.
Maxwell’s drug treatment costs £13,000 a year and another £6,000 a year is needed to pay for physiotherapy. The couple are also currently fundraising for an £18,000 hydrotherapy pool.
Their next fundraiser will be at Maxwell’s Nightclub at Slinfold Golf and Country Club in Stane Street, Slinfold, on September 30 from 7.30pm - 12.30 am.
There will be dancing, a raffle, auction and buffet. Tickets are £20.
Pictured is Maxwell with his mum and dad last year at Brighton Sea Life Centre at a special visit organised with the help of children’s charities Merlin’s Magic Wand and Rays of Sunshine. Photo: Julia Claxton