Sunday 23 September 2018

'My son can't get a medical card, despite his rare genetic condition'

Denise with Jake (5) who is one of only three people in Ireland with Bannayan-Riley-Ruvalcaba syndrome
Denise with Jake (5) who is one of only three people in Ireland with Bannayan-Riley-Ruvalcaba syndrome

The mum of a five-year-old boy with a rare genetic condition which leaves 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 the country with Bannayan-Riley-Ruvalcaba syndrome.

She believes all children with rare genetic conditions should have medical cards.

Jake was diagnosed when he was three after he failed to met developmental goals.

"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 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," she said of Jake's condition.

"He has constant chest infections and has had pneumonia twice in the last year."

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 because of the wages she and her husband Shane earn.


She said Jake got a GP card because he can become hypoglycaemic; he has been referred to a metabolic doctor to see if it is connected to his rare condition.

When this happens she must bring him to straight to Our Lady of Lourdes Hospital in Drogheda, which is the closest Emergency Department to their home in Termonfeckin, Co Louth.

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."

Denise estimates she still owes close to €400 for last year for inpatient care for Jake when he had pneumonia.

The HSE said that Medical Card/GP Visit Card eligibility is determined by a financial means assessment.

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