Kilkenny youngster Isaac (7) still waiting on Spinraza

The parents of a Kilkenny youngster who had life-saving treatment approved are calling on the Minister for Health, Simon Harris to ensure that the HSE delivers on their promise.
In June Spinraza, a drug used in the treatment of Spinal Muscular Atrophy, was approved for Isaac Brennan and 25 other children.
Four months on Isaac and the other 25 children are still waiting for treatment.

“We are facing into another deadly flu season, without Spinraza, despite being promised it by the HSE,” Isaac’s parents, Carol and Philip said.
“Isaac has developed scoliosis at the top and bottom of his spine over the last few months, which will get worse as time goes on and make it more difficult for him in his daily life.
“We are heartbroken, devastated, humiliated and disgusted at the treatment Isaac is once again receiving from the HSE; no communication, no confirmed dates and no plan going forward.

"We had received provisional dates of July, August and October/November for the roll out of Spinraza and just last week, there appears to be some doubt over the October/November roll out to date.

"It is unthinkable that Isaac may not receive Spinraza in the coming weeks. We are calling on Minister Harris to ensure that the HSE delivers on their promise without any delay.”
Isaac is forced to use a wheelchair full time because of SMA. Spinraza is recognised as having positive effects and increasing life expectancy for people living with SMA.

“At the time of diagnosis, when he was just two we were told that SMA is a progressive muscle weakness and that Isaac would never walk independently and would have a life expectancy of 20 years
“As you can imagine this was devastating news to be at the receiving end of and it took us a long time to come to terms with this diagnosis.
“Isaac goes through intensive physiotherapy and occupational therapy everyday with us to keep his muscles strong and active.
“Spinraza would help improve Isaac’s strength and possible ability to walk and potentially increase his life expectancy,” his mother Carol said.

Seven-year-old Isaac is now forced to use a wheelchair full time because of SMA.

A spokesperson for the HSE said: "Application for approval is based on clearly defined criteria and follow these guidelines.

"The number of individuals treated and their commencement on treatment is as per the clinical guideline.

"All patients that have been recommended clinically for treatment have been approved to date."