LITTLE Tilly McDonough bravely smiles for the camera despite battling a rare condition that could claim her life in her early 20s.
At just four years old, she is the strongest she will ever be after being struck down with the muscular wasting disorder which normally only affects boys.
By the time Tilly is 11, she will no longer be able to walk. Only two or three years later, she will also lose the ability to use her arms.
The “bubbly” Barnard Grove Primary School pupil will never have the same quality of life as her close friends after she was diagnosed with Duchenne Muscular Dystrophy – one of only an estimated 50 female sufferers in the country.
The muscular wasting disease, which will also attack Tilly’s vital organs and results in a life expectancy of early 20s at the very longest, only affects one in every 3,500 boys – and is even rarer in girls.
Tilly’s mum, Michelle, told the Mail of the “heartbreak” they felt when they were told of the diagnosis and the moment Tilly asked her: “Mummy, why can’t I use my legs?”
But despite her battles, Michelle said Tilly never complains and doesn’t even tell her family of the pain she feels which sometimes leaves her unable to get out of bed all day.
Tilly’s specialist consultant Professor Volker Straub, who is based at the Centre for Life, in Newcastle, says there are only 10 female sufferers of Duchenne Muscular Dystrophy in the north of England and believes there are only around 50 throughout England.
But many of them will only suffer with minor symptoms which don’t come on until later in life.
To make Tilly’s condition even rarer she is already suffering with the major effects of the disease now, as a young male sufferer would.
The chances that Tilly would even contract the disease are even more minute due to the fact mum Michelle isn’t a carrier.
Michelle, 32, said she realised something wasn’t right with Tilly when she was 12 months old but it wasn’t until a year later when the youngster was diagnosed with Duchenne Muscular Dystrophy.
“After she had been for tests I got a letter asking us to go and speak to the specialists, I knew then that there was a big problem,” said Michelle, who lives in Bruntoft Avenue, in Hartlepool, with husband, Christopher, 42, and the couple’s older daughter, Caitlin, eight.
“They told us Tilly was suffering with Duchenne and it was just heartbreaking, we were in absolute shock,” she added.
What made the diagnosis even worse for Michelle and Christopher, who are both unemployed, was the fact they knew nothing about the disease.
Even as she attempted to discover more, all she could find was how Duchenne affects boys.
Tilly and her family attempt to get on with their life with as much normality as possible.
The youngster spends two full days and three half days at Barnard Grove Primary School every week, who Michelle thanked for its “excellent” support.
But the condition means Tilly suffers with extreme fatigue, cramps and pain in her legs and back.
“She won’t admit when she is in pain, sometimes you just catch her rubbing her legs and back,” added Michelle.
“When she was diagnosed the specialists told us that until she is five she will continue to get stronger, but then it will start affecting her even more.
“She knows something is wrong, when we are at the park we take her wheelchair because she can’t walk for too long.
“There was a group of kids playing football and she asked me why she can’t use her legs. Times like that are heartbreaking.
“Tilly is a character, she is bubbly and always has a smile on her face, we need to stay strong for her.”