A Sixmilebridge family will lead a Dáil demonstration today aimed at securing access to a vital medical treatment for around 25 children with Spinal Muscular Atrophy.
The family of 11-year-old Jordan Perez is one of those who want the State to fund access to Spinraza, which would cost nearly €1.5 million euro per patient over five years
So far, however, this has been deemed too costly and last week some families were informed that the HSE wouldn’t sanction the use of the drug because of the cost.
Jordan’s mother Sinead Perez says time is of the essence for her son, and others with the degenerative condition
