Glen hoping for funding for new ‘miracle drug’
By Maurice Garvey
A TEENAGER who is doing his Leaving Certificate this year, hopes the Irish government will agree to funding for ‘miracle drug’ Spinraza to treat his rare medical condition.
Glen McHugh Farrelly (16), from Clondalkin has Type 2 SMA (spinal muscular atrophy), a disease that affects motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe.
Glen McHugh Farrelly
“He can’t walk or raise his hands, it affects his respiratory system and he is on oxygen – a BiPAP – every night,” said Glen’s mother Lisa McHugh.
Despite the difficulties he faces, Glen loves going to school in Deansrath Community College and has dreams of working in zoology.
On Thursday (September 20), Glen and Lisa campaigned outside Dáil éireann with members of SMA Ireland to try and pressure the Irish government to release funding for Spinraza – the first approved treatment for SMA sufferers.
“It has been trialed and tested in the USA, and trialed, tested and funded in 20 European countries,” said Lisa.
“In June, Simon Harris (Irish Health Minister) signed Ireland up to the Benelux agreement, to get these drugs at a cheaper price. Other European countries have funded it, Ireland has yet to fund it.
“This medication has been dubbed a ‘miracle’ drug. It really helps the younger a child is. Some of the kids (Spinraza treatment) are now walking. For older children, it could bring back 10 per cent of their muscle strength and then sustain that.”
Glen was diagnosed as an infant (15 months), and requires a wheelchair.
According to Lisa, there are approximately 22 people in Ireland with Type 2 SMA, and five with Type 1 (infants with low life expectancy) – Type 1 infants have been given access to Spinraza in Ireland.
“He loves school, English, writing, poetry, all the plays, but gets very tired and has to take days off. In the winter there is a high risk of infection. He would like to work in zoology, he loves animals dead or alive, dinosaurs, everything. ”
