Time to learn about MPS

THE mother of 14-year-old Kilcummin boy Shane McGlynn – who is one of just ten people of Ireland with the rare genetic disorder ‘Hunter Syndrome’ – has said this week is the perfect time for people to learn more about rare disorders like the one that affects her son., given that May 15 marked the Irish MPS Society’s ‘MPS Awareness Day.’

MPS diseases are rare metabolic diseases like Hunter’s, and Shane is one of just ten people in Ireland and 2,000 people worldwide with Hunter Syndrome.

“It’s not a very nice syndrome,” Deirdre told The Kerryman. “The life expectancy for someone with the type of Hunter’s that Shane has is between 10 and 20 years.

“Shane’s enzymes can’t break down sugar molecules, which has caused a lot of damage to our boy. The effects have included severe hearing loss, contracted fingers, brain deterioration, and enlargement of major organs.

“He has to attend Temple Street for treatment on a very regular basis, and he’s also missing from school every Thursday for weekly home treatment in the form of IV enzyme replacement therapy.

“MPS Awareness Day fell this week, and unfortunately a lot of people don’t know what Hunter Syndrome is, and what its effects are. That’s understandable, because only 2,000 people worldwide have Hunter’s, but we’d just like people to educate themselves and learn about Shane’s condition, and the effects of these conditions,” she added.

Shane attends Saint Brendan’s College in Killarney, and the people at the school recently held a “Wear Jeans” day to raise funds for Shane’s medical costs. This week, they presented a cheque of just over €1,000 to Shane, and his Mom speaks very highly of everything the school has done for Shane.

“I’d just like to thank everyone involved for their jeans day. Shane is in first year, and the school has been so helpful to him from the start.

“So many people have been most helpful, including the local GAA club. GAA is one of Shane’s great passions alongside Man United, and farming!

“Once silage season starts up, I’ll have to bring Shane around in the car after all of machinery. He just loves this time of year!”

“GAA is one of Shane’s great passions, along with Man United and farming. He loves silage season!

Teacher Annette O’Neill presenting the proceeds of the Genes ‘Jeans’ Day at St Brendan’s College by teachers, students and parents €1085 to Shane and Deirdre McGlynn for Rare Disease with (left) Sean Moynihan SNA and Sean Coffey Principal at St...