Brendan Griffin (Kerry, Fine Gael) | Oireachtas source

I want to raise the case of Theo Whelan, a five-month-old Killorglin boy who has spinal muscular atrophy. Theo's parents, Shane and Stephanie Whelan, have contacted me to try to get the HSE to give approval to the so-called miracle drug, Zolgensma. I understand that two children, Theo and little 17-month-old Kate Mynard in Cork are the only known suitable recipients in Ireland for this drug, which can dramatically improve the quality of life with children with the condition if the drug is administered before the age of two years. Deputy Christopher O'Sullivan raised the case of Kate with the Taoiseach very recently. Time is crucial. I recall from the Orkambi campaign that this process can take far too long. Ireland is in negotiations with the company, together with Holland and Belgium, but while those negotiations are ongoing, Holland is administering the drug to children who need it right now before a long-term arrangement can be put in place. Can we pursue that? Can the Minister contact the Taoiseach's office to pursue the matter?

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