The parents of a five year old girl have been warned by her school over her “unauthorised absences” – despite the fact she has a rare and incurable cancer.
Leah Gillon, known as Lilly, was diagnosed with an ependymoma tumour four years ago and has undergone pioneering proton therapy in America as well as surgery to remove the tumour at Birmingham Children’s Hospital.
She attended just 67 per cent of classes at Warren Farm Primary School in Kingstanding, because as her parents claim, due to her illness Lilly underwent two surgeries and has had scores of critical hospital appointments.
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The Mail Online reports:
Her mother Cherie, 28, who has three other children, said Warren Farm Primary in Birmingham would no longer authorise absence for Lilly to miss school unless they provided medical proof of her incurable cancer.
Last year, she could only attend 67 per cent of her classes due to her illness.
She has to go to hospital every three months for an MRI scan to check the tumour has not returned.
Mrs Gillon said: ‘This was a situation they knew about when Lilly first started school and to turn around and say they don’t believe she has cancer is laughable.
‘As parents it is the worst thing to go through, trying to help your daughter and it is a kick in the teeth to know that people don’t believe just how sick Lilly is.
‘My only goal is to keep my daughter safe and healthy.
‘I don’t want my daughter to be at home. I want her to be at school like every other child her age, having fun and learning with her friends.
‘I’m put in a position where I feel like a bad mother when I am doing everything in my power to help them. The school told me that I have failed my child.
‘The school are in constant contact with her nurse, so I have no idea how they could say they know nothing about it.
‘The doctors told us that Lilly’s condition was manageable but it wouldn’t be possible to cure her.
‘The fluid in her brain causes the tumour and although we had it removed we have to keep checking in case it reoccurs.’
She added: ‘Lilly’s had two major operations in two years. The tumour was totally removed in 2011 and she’s had stable scans since then. But she’s not in remission.
‘The school letter said she was in remission and that term is deeply offensive to people affected by ependymoma.
‘People with ependymomas don’t go into remission.
‘It’s incurable and the longest anyone has ever survived after having a tumour removed was 12 years. It’s a recurring tumour.
‘It’s a manageable cancer but we don’t know how long she is going be stable.
‘She has ongoing health issues. She struggles with her balance because her reflexes in her legs aren’t very good.
‘She has problems with her airways and she has an iron deficiency.
‘Leah has been mistreated. I feel like that school has put my family through hell and they are making my life unnecessarily stressful. I think it’s a disgrace.’
Mrs Gillon has now taken daughters Kacie, eight, and Chelsey, 10, out of the school while they wait to attend somewhere else.
Husband Graham, 38, manager of a car manufacturer, said: ‘Lilly needs time off for hospital appointments and has already had to have three days off in the past two weeks.
‘I was disgusted that the school could say that.
‘Lilly is shortly to have her three-monthly MRI scan to check if the tumour has come back – we live our lives three months at a time.’
Niamh Harris
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