Son having to wait for drug ‘is breaking my heart’, says mother
THE mother of a boy with a rare muscle-wasting disease, who has not yet had access to the drug Spinraza, says the waiting “is breaking my heart”.
Jordan Perez (12), from Sixmilebridge, Co Clare, was born with the genetic disorder spinal muscular atrophy (SMA).
His mother Sinead said when the drug was approved for use in June 2019 she thought “our prayers had been answered”.
She said that since it was approved for use by the HSE last year “Spinraza is making such a remarkable difference to the other children and their families. One girl couldn’t hold her hands up over her head for some time before receiving Spinraza and now she can.
“They are all doing so much better and gaining milestones every day. I’m so very happy for them and their families. I just wish it was us.”
Sinead is campaigning for Jordan to get Spinraza. “It’s been a torturous 13 long months... My son deserves better. He deserves the treatment that was approved in June 2019. I don’t know what to say to Jordan when he asks when he will be getting it.
“It’s breaking my heart. The last year has been very upsetting as every month we’re waiting for news if he’s going to be starting Spinraza soon.
“He keeps asking me himself now and I don’t have answers for him. He feels very let down and says he may never get it at all.”
She said new Health Minister Stephen Donnelly “strongly supported our campaign in 2019... I’m asking him to please make this happen now. Make the necessary resources available to Jordan and the other children.”
Earlier this week Independent TD Joan Collins told how there were 12 children waiting for access to Spinraza.
In a statement, Children’s Health Ireland said: “Currently there are 34 patients with SMA aged 18 years or under who are deemed clinically eligible for treatment with Spinraza by the paediatric neurologist in CHI.
“Individual applications for each patient are prioritised based on clinical need and a treatment plan and a date for administering the drug is agreed with their treating clinician.”