Clare child 'happiest boy on the planet' ahead of new drug treatment

Jordan Perez will start treatment with the drug Spinraza next month. Pictures: Ciara Wilkinson

A 12 year old boy with a rare muscle-wasting disease who got news that he will start treatment with the drug Spinraza next month, “is the happiest boy on the planet,” according to his mother.

It is over a year since Spinraza was approved for use by the HSE but it was only this month that Sinead Perez was given a date for her son Jordan to start his treatment. She previously described waiting for the date as “breaking my heart; now she says it is “the miracle” they were waiting for.