A Carrickfergus mum whose little girl needs round-the-clock care has said she “can’t believe” her daughter was refused Disability Living Allowance.
Sophia Hamilton, who is 13 months old, underwent life-saving treatment in Dublin and Belfast after bring born with severe heart complications.
Sophia also suffers from a condition called genetic duplication which affects her immune system, leaving her prone to infections.
Her continuing ill health means she needs constant care from her mum, Erin (20).
“We didn’t know about the heart condition when she was born; it was only when they were doing her checks for going home that a student nurse picked up on a murmur,” Erin said.
Erin was later told her daughter needed urgent treatment, with little Sophia going through open heart surgery at only five days old.
“She was in an out of hospital for months; there were times when she was on and off the ventilator and we weren’t sure she was going to make it,” added Erin, who is also mum to four-year-old Justin.
“She’s still in and out of hospital for appointments and ECGs. She has heart disease and could go into heart failure at any moment, and she’s had infections since her immune system is so low. She needs constant care.”
Following suggestions from a number of people, including health professionals, Erin decided to apply for Disability Living Allowance (DLA) for Sophia.
“She met all the criteria and I provided everything that was asked for,” she added.
However, the local mum was astounded to receive a letter informing her that the application had not been successful.
“The letter said that she had to have an illness and require more than one hour of care a day - but Sophia needs 24-hour care,” said Erin, from the Glenfield area of the town.
“I just couldn’t believe it, after everything we had been through. I just cried.”
Indicating she may appeal the decision with the Department for Communities, which is responsible for administering the DLA scheme, Erin added: "I just think Sophia deserves something to make her life a little bit easier."
A spokesperson for DfC said: “The Department 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. Customers who disagree with decisions about benefit entitlement have a right of appeal to an Appeal Tribunal which is completely independent of the Department.”