Mum of baby who spent month in Dublin hospital with serious heart issues refused allowance
The Co Antrim mother of a baby girl born with severe heart complications and a genetic disorder that impairs her immune system said she cannot understand why she was refused Disability Living Allowance.
Little Sophia Hamilton was born 13 months ago but was so ill that doctors feared she might not live at all.
Cardiac consultants and surgeons in Belfast and Dublin battled against the odds to save Sophia.
After a month in Dublin and further treatment in Belfast, Sophia's mum Erin was eventually able to bring her baby girl home to Carrickfergus.
Sophia's continuing ill health means single parent Erin is on permanent high alert over her daughter's care, which often means sleepless nights as well as constant care through the day.
Erin said she was advised to apply for DLA so she could give her daughter a better quality of life.
She explained: "Sophia has been through so much since she was born and she will have a lot to cope with in the future, so when someone on her care team suggested she could qualify for DLA I applied for it.
"This was an extensive and complication application. They had a lot of information about just how much care Sophia needs so I was shocked when I got a letter back telling me my application had been turned down.
"They said the child had to have an illness or needed to be looked after for more than one hour an day.
"My daughter has a serious heart condition that will affect her for the rest of her life and means she will require further surgery up until she is 21 years old.
"On top of that she also has a condition called Gene Duplication which affects her immune system and will leave her prone to infections.
"Sophia needs 24-hour a day care, so many nights she will wake up after three or four hours sleeping and that will be her until the morning so obviously I am up through the night looking after her.
"I want to learn to drive so I don't have to use public transport all the time to get her to and from her hospital appointments and in case I need to get her to hospital in an emergency.
"I cannot understand how someone sitting in an office can make a decision like this about me and my daughter. I think she deserves to have her life made a wee bit easier after everything she has already been through and everything that lies ahead of her."
A spokeswoman for the Northern Ireland Department for Communities which is responsible for the Disability Living Allowance scheme said it cannot comment on individual cases.
"Entitlement to Disability Living Allowance is not based on the medical condition or disability itself but the personal care and help in getting around that a person needs," she said.
She added that customers who disagree with decisions about benefit entitlement have the right to an independent appeal.