A MUM whose baby daughter has already been through three heart operations says she feels ‘frustrated and annoyed’ she is missing out on a government disability allowance.
Helen Johns, 36, from Milton, said her seven-month-old Hope Destiny Page has been denied the disability living allowance, even though she has been told she should be entitled to it by health workers.
I’ve got to constantly check that she’s breathing and not turning blueHelen Johns
Helen said Hope had a condition called pulmonary atresia with ventricular septal defect, which meant her life was constantly at risk.
She was born with no heart valve and had a hole in her heart.
Helen said: ‘There are other children who were born around the same time as my daughter with cardiac problems and they’ve got it so why doesn’t she? It doesn’t seem to be fair.’
Helen said she learned her daughter would have heart problems after her 20-week scan during her pregnancy.
She said: ‘The consultant took me into a room and said “you can have an abortion if you want”, but I don’t agree with that. That’s how serious it is. But I took the risk.’
Hope had an operation at nine days old, followed by major heart repair surgery and has also had a pacemaker fitted.
Helen said: ‘My daughter could die at any minute. She needs constant care and support.
‘I’ve got to constantly check that she’s breathing and not turning blue.
‘When I walk into shops with a security system the alarm can go off so we have to tell them that she’s got a pacemaker.’
Helen said cardiac specialists she had spoken to couldn’t believe Hope wasn’t eligible for the disability living allowance.
She said: ‘It has been really awful. It’s not about the money, I just want people to realise how serious her situation is. A lot of people who need the help don’t seem to be getting it.’
A spokesperson from the Department of Work and Pensions said: ‘Disability living allowance helps to cover the extra costs of caring for a baby with a disability or health condition who requires substantially more care than would be typically expected for a non-disabled child of the same age.
‘Decisions are made based on all the evidence, including from the parents, GP and hospital.’