Mum of boy with muscle disease slams HSE funding row

THE mum of a young boy with a rare muscle-wasting disease has revealed her frustration as she awaits an HSE decision on funding a new treatment for him.

Jordan Perez, 11, was diagnosed with spinal muscular atrophy type 2 at just 10 months old.

Mum Sinead, from Co Clare, hopes the drug Spinraza, also known as nusinersen, will stop him deteriorating further and may help him regain some of the muscle function he has lost.

She told how her son has become weaker over the past six months as they wait for a decision by the HSE on whether to fund the drug for her son and 24 other children.

Sinead added: “It is very hard to convey in words how absolutely frustrating this is. It is disgraceful behaviour by the Government and they should hang their heads in shame.

“We were told last year by someone in HSE they got the lowest price and at this stage, I wonder do they want it to be given to them for free?”

Sinead will be among parents and other supporters campaigning for access to the drug who are marching to the Dail on Thursday, which is World Rare Diseases Day.

She said: “Over 86,000 people have signed an online petition supporting it being reimbursed.

“We are calling on all the TDS who have advocated on our behalf in the last six months to come out and stand with us and our children on Thursday. It’s so hard to keep positive and