Family of Leitrim girl suffering from rare disease call on Health Minister to fund vital drug

The family of a Leitrim girl who suffers from a rare disease is calling on the Minister for Health to prevent the HSE from withdrawing the funding for a life changing drug to her daughter.

Aughavas native Grace McIntyre suffers from Morquio, which affects the skeletal system.

Grace is nine years old but her body is still at the development stage of a three year old.


She is just one of three Irish children who suffer from the rare condition and earlier this year was approved to receive Vimizim.

It’s understood that the HSE has confirmed that just one of the three children will be able to receive the €400,000 per year drug to treat the condition and Grace is set to miss out when the funding for her drugs treatment runs out on December 5th.

Her mother Barbara told Shannonside FM that they will be left without treatment for Grace from next week