The mum of a little girl with a genetic disorder so rare it has no name is pleading to get her daughter back into school – after months of operations, hospital stays and ill health.
Leona McMillan, aged seven, is currently out of classes altogether as discussions about her future drag on.
The youngster previously attended Grenoside Primary in Sheffield, but for medical reasons for only four hours maximum a day – which mum Jayne believes is not enough.
“Leona is a really intelligent girl and school is the brightest thing in her life,” said Jayne.
“Each day she gets up and asks me if she can go to school – she gets so fed up of being stuck at home.”
Jayne, of Moonshine Way, Southey Green, said she believes the school has been doing its best to help, but that staff insist they don’t have the skills to cope with Leona’s special medical needs.
Leona has to be fed through an intravenous tube which needs attention in a sterile environment.
Jayne has also been told Moss Brook Special School is unable to meet her daughter’s specific needs and she does not feel another alternative, Woolley Wood Special School, is appropriate.
“It’s such a shame because Leona loves school and she doesn’t understand what’s going on,” she said.
“I just think she deserves to have an education. Leona is very brave, she never cries and never complains, and she gets so down.”
Jayne said Leona had started school normally when she was five, but had since had operations on her bladder, hip and bowel, putting her in hospital for months at a time.
Currently she can go for only five hours a day without being on her nutritional tube.
“Every time I think we are getting somewhere, something else comes up,” said Jayne.
“Staff at the school say they need more training, or they come up with other problems – sometimes I wonder if deep down they don’t want her back at all.
“It also makes me wonder if there’s anyone else in the city who is in the same situation as us?
“Surely there must be other children out there in Sheffield who need a nutrition tube, but who are in regular education.”
A Sheffield Council spokesman refused to respond in detail to Jayne’s concerns.
He said: “We cannot comment on individual cases as there are issues of confidentiality which arise.
“However the headteacher and chair of the governing body at Grenoside have confirmed the school is keen to work with all parents to ensure children are in learning every day.”