Boy with rare genetic illness is denied a medical card
Published 11/12/2015 | 02:30
The mother of a five-year-old boy with a rare genetic condition leaving him at high risk of developing cancer says he has been refused a medical card.
Denise Tuohy said her son Jake is one of only three children in Ireland diagnosed with Bannayan-Riley-Ruvalcaba syndrome.
"We were told that children with this condition can get cancers and tumours and can have autism. Jake doesn't have autism but he does have autistic traits," she said.
She also said he has "a 75pc chance of getting cancer. It comes with weak muscle tone, his fine motor skills are bad, he is quite tall and prone to scoliosis of the spine."
Her son "has constant chest infections and has had pneumonia twice in the last year".
"He is classed as having a disability and has an SNA in school."
She applied for a medical card for herself, as she has May-Thurner syndrome which leaves her at risk of blood clots, and also one for Jake.
She was refused a medical card and Jake got a GP card. She was told that Jake was refused a medical card due to the earnings of herself and husband Shane.
Denise said she and her husband Shane both work and are on the average wage. She is a youth justice worker in the Boyne Garda Youth Diversion Programme and Shane works as a printer.
They have two other children, Adam (18) and Teegan (13), and "we earn enough to pay our mortgage and our bills. I have paid property tax, council tax, we have our cars insured and taxed. We are literally surviving."
With a medical card, she would not have to pay for Shane's hospital stays.
"I am still paying off last year's hospital bills, I haven't even started paying this year's bills so I am paying them off monthly."
The HSE has invited the family to make a new application and they will assess it.
Earlier this month Denise hit out at the €75-a-night bill she was told she would have to pay for four nights she spent on a trolley in Our Lady of Lourdes Hospital.
The hospital subsequently waived the fee.