Saturday 20 July 2019

New drug offers hope for Balrothery teenager

A shot at a more independent life after Spinraza is finally approved here

Ken Phelan

The recent licensing of a new drug that treats a rare degenerative disease is offering hope to one Balrothery mum and her seventeen-year-old son, who has lived with the disease since early childhood.

Naglis Montvilas, who moved with his family to Ireland from Lithuania fifteen years ago, is hopeful that the drug, Spinraza, will offer some relief to his condition - SMA (Spinal Muscular Atrophy) - which continues to deteriorate.

Naglis was first diagnosed with SMA Type II when he was one year old, and with him now being confined to a wheelchair, his mum Daiva is also hopeful the new drug will prove to be a success.

Speaking before he goes on a trial for Spinraza, Naglis explained how SMA affects him, and spoke of his hopes for the breakthrough drug: 'The doctors always told us that it's an untreatable disease, but now that we've heard about Spinraza, it gave us hope.

'The doctors kept saying oh, it might not help you, and not to have our hopes up too much, but you can't really say that to people who've been waiting for this their whole lives.'

He said he hoped the drug will help him 'be more independent'.

Fingal Independent