A cute seven-year-old girl is one of just 20 people in the WORLD suffering from a disease which is so rare that it took doctors THREE years to diagnose her.
Matilda Hatton suffers from Sensenbrenner Syndrome which causes her to have morphic facial features and shorter limbs.
The youngster grows at a slower rate than other children because of the ultra-rare multi-system disorder.
She was born with just 30 per cent kidney functions and her liver was also abnormal.
Incredibly, the disease is so rare that Matilda wasn’t diagnosed until she was three-years-old because doctors were baffled by the symptoms.
She underwent a kidney transplant in October 2014 and has to be fed via a tube directly to her stomach for 10 hours every night.
Her parents Les Hatton, 57, and Michelle Evans, 38, who is Matilda’s full-time carer, only know of one other person suffering from Sensenbrenner Syndrome and they live in Canada.
Les, who cares for Matilda as well as his autistic nephew, said looking after their daughter is a 24-hour a day job.
The dad-of-three, who has two children, Michael, 34, and Melanie, 32, from a previous marriage, said: “We’d been warned not to look on the internet but we did.
“We’ve read so many horror stories but we’ve had to try and ignore them. It’s so important to think positively.
“During that time when they didn’t know what was wrong with her, we were just living each day as it went.
“The doctors just didn’t know what was going to happen with her and they thought she would be on dialysis soon after her birth because of her kidney function.
“Yet she didn’t need dialysis until she was four-years-old and then two years later she had her transplant.
“We thought she’d be able to eat solid food afterwards but she still doesn’t. She tends to put things in her mouth chew it and then take it out.
“She does the same with sweets and chocolates.
“But despite all the problems she just gets on with it, she is just Matilda.
“She doesn’t worry about everything, she is just a cute little girl and a mischief maker.”
Days after Matilda was born she was rushed from Stafford Hospital to Birmingham Children’s Hospital where she has received treatment and been monitored ever since.
Doctors eventually told Les and Michelle, who live with Matilda in Walsall, West Mids., their daughter had Sensenbrenner Syndrome when she was aged three.
Incredibly, there have only been 20 sufferers recorded worldwide since 1975.
Mum-of-three Michell, who has two daughters Megan, 18, and Molly, six, from a previous relationship, added: “A woman from Canada messaged us one evening to say her child also had Sensenbrenner Syndrome.
“It was such a relief to hear there was someone else out there. Her little girl looks the spitting image of Matty.
“They were told she wouldn’t survive and there was nothing that could be done.
“I think it gave them hope and reassured them that they weren’t alone.
“Our little girl is bubbly and active and she doesn’t let her illness get in the way of things. She loves going to school and mixes with all the other kids.
“She puts up a front fighting off any tiredness she gets from the condition. But it does eventually takes its toll.”
Matilda has to go for regular check-ups every six weeks at Birmingham Children’s Hospital, which is aiming to raise £3.65 million to fund a rare diseases centre at the site.
Matilda’s picture will now be used along with 11 other youngsters who are suffering from uncommon conditions as part of an fundraising exhibition in Birmingham city centre next month.
