A girl with a Benjamin Button-style disease which is so rare she is the only person in the WORLD to have it has been left heartbroken at being unable to start school.
Isla Kilpatrick-Screaton suffers from a strand of mandibuloacral dysplasia – which causes rapid ageing of the cells and gives her an appearance older than her years.
The three-year-old was forced to shield for at least 12 weeks during the first lockdown due to being in the high-risk coronavirus category.
But she is still being denied an education despite not having to shield anymore – much to the disappointment of her parents Stacey, 34, and Kyle, 37.
Kyle says Isla waves off her eight-year-old sister, Paige, each weekday morning when she heads off to school.
But every time she sees her own uniform hanging in the wardrobe she keeps asking her parents: “Can I start big school now?”
Despite her health problems, it has no effect at all on her mental abilities and her parents say she is a happy little girl who is keen to learn and play with other kids.
Self-employed builder Kyle, of Leicester, said: “Every time she sees her school uniform she asks ‘can I start big school now’?
“We don’t want to tell her it’s because she different – but we have to tell her it’s because she’s different.
“She’s getting to that age now where she’s starting to understand that fact and its heartbreaking that she can’t go.
“Granby Primary School were happy to accept her and did everything in their power to get her to school. She was due to start in September.
“Isla was having to shield earlier on in the pandemic but she’s not shielding any more.
“The Government guidelines for tracheostomy patients mean the school can’t have her yet even thought they are willing to have her and put suitable provisions in place.
“I thought as a country we weren’t supposed to discriminate on the grounds of disability – but it appears that’s what is happening.
“We obviously want her to be safe but the school have worked hard to ensure that would happen.
“The school is getting just as frustrated as we are and I know the boss is writing to her bosses to try and get this resolved.
“Since shielding came to an end in September she’s been leading a normal life but she can’t have an education yet.
“She’s missed out on so much fun in the run-up to Christmas. It’s not like they can set her homework at that age, she needs to play and interact with others.
“She’s stuck at home with her mum and dad and it’s boring for her. Isla wants to be at school, meeting friends, learning to play together and share.
“You can’t teach a three-year-old child that sort of thing when she’s at home with her parents. She’s missing out and it doesn’t quite seem fair.”
It is the second blow for the family after Isla’s dreams of going to a nursery school were also thwarted by the pandemic.
She was originally accepted into a nursery but they had to withdraw the offer when Covid-19 reached the UK
Kyle added: “She’s not doing what children her age should be doing and its incredibly sad for her because she sees her sister going off to school each day and can’t do the same.”
Earlier in the pandemic Isla went viral on Tik-Tok after heartwarming videos of her in isolation racked up millions of views.
Kyle said: “The response was incredible. We’ve tried to have as much fun as we could in lockdown but its got to the point where we want her to be in school.
“It’s for her sake more than anything and it has been a constant battle. The school have been brilliant but its proving to be a really tough time.
“She would have had so much fun at this time of the year but we’re still in limbo and can’t see an end to it either.”
Stacey and Kyle had not been aware of any health problems during the pregnancy and it was only after Isla born that her health issues became apparent.
Isla nearly suffocated after being born at 36 weeks at Leicester Royal Hospital weighing 5lbs 10oz, on February 2, 2017.
It was a month before Kyle and Stacey, were able to take her home – but she was rushed back to hospital soon after when she turned blue.
She had to be resuscitated after another emergency operation when she was three months old, and it was found her tongue was blocking her airway every time she became upset.
She was diagnosed with mandibuloacral dysplasia in October 2017, a condition that causes a variety of abnormalities involving bone development and skin colouring.
But doctors were left baffled when tests results showed a mutation in her genes that had never been seen before.
Kyle and Stacey were left shocked after being told by consultants to “start Googling” as they could not tell them exactly what was wrong with their daughter.
Stacey, who quit her job as a teaching assistant to become a full-time carer for Isla, said previously: “It takes a lot out of the family.
“When we had the diagnosis the genetic consultant said Isla is the only one in the world to have this particular misspelling of the gene which causes the mutation.
“We were light-heartedly told to ‘get Googling’. Even with the rarest conditions there is a network of carriers, but we don’t even have that.
“They couldn’t tell us how she is going to progress. No one else has the mutation of the gene which causes this deficiency.
“There only appears to be seven examples ever in medical literature of mandibuloacral dysplasia – but none of them are this particular mutation.”