A Clare mother is calling on the Health Minister to take action to ensure the provision of funding for life-saving surgery for people suffering from EDS.
Anne O’Gorman’s daughter Zara is one of two children in Clare suffering from Ehlers Danlos Syndrome, a rare condition which relates to connective tissue disorders.
They’re trying to raise 100,000 euro to pay for a necessary procedure abroad and the Health Minister has offered to meet with them.
Ehlers-Danlos Syndrome is a rare disorder affecting the connective tissues and over time, it’s crippling and life-limiting.
But despite the impact of the condition, there’s virtually no support in this country for people who suffer from it and securing vital treatment overeseas can be extrememly expensive.
A number of cases have emerged in this country in recent months, including two children in Clare – Aoife Sage from Sixmilebridge and Zara Cronin from Corofin.
Clare’s Fianna Fáil TD Timmy Dooley raised the matter in the the Dáil, where he’s urged the Health Minister to support and fund intervention for patients.
In response, the Health Minister has offered to meet the Clare families of those suffering from EDS.
Minister Simon Harris says a plan for rare diseases, including EDS is being drawn up, but he admits the State should be doing more.
But the mother of one of the two children affected by the condition here says she wants action, rather than words.
10-year-old Zara Cronin, from Corofin is due to travel to Barcelone for life-saving surgery in September and her family will have to raise around 100,000 euro themselves, as the state doesn’t support the cost of these operations in private clinics abroad.
Her mother Anne O’Gorman has even tried to offer up her home as collateral to come up with the funds – she says they need action from the Health Minister, rather than words.
