Teenager battling SMA illness celebrates great Leaving Cert

By Maurice Garvey

A TEENAGER battling a debilitating illness, celebrated a successful Leaving Cert and looks set to follow his dream of becoming a writer.

Glen McHugh Farrelly (17), from Clondalkin, has Type 2 SMA (spinal muscular atrophy), taking away the ability to walk, eat, or breathe.

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Glen McHugh Farrelly thanks everyone for their support

The Deansrath College student has campaigned for government funding for ‘miracle drug’ Spinraza for years, and was first diagnosed with the rare condition as an infant.

On discovering that the Irish government approved funding for extremely expensive Spinraza treatment during the exams last June, Glen’s mother Lisa McHugh went through a roller coaster of emotions.

“We got the news in between Glen doing his Irish Paper 2 and Biology,” said Lisa.

“I just told him to keep his game face on, and stay on top of it. He said it himself, it wasn’t the easiest year. I’m quite proud of him.”

Glen, an avid student of English and Zoology, thanked residents for their support throughout the year.

He said: “It was a struggle fighting for a drug to save my life while studying for my Leaving Cert. Although I’m still waiting to start my Spinraza journey, I would like to thank everyone for the support along the way. I’m looking forward to going to college with a brighter future ahead of me.”

Spinraza – the first approved treatment for SMA sufferers – was trialed and tested in the USA, before becoming available in 20 European countries, prior to the Irish government decision last June.

The HSE said the drug would cost about €600,000 in the first year to treat each Irish child suffering from SMA and €380,000 a year after that.

There is an estimated cost in excess of €20 million over a five-year period.

According to Lisa, there are approximately 22 people in Ireland with Type 2 SMA.

Lisa says her son’s preference is to study English and Science at Maynooth University, but they will assess all college options for a Clondalkin youngster looking forward to a brighter future and a third level education.

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