Joy as Kilkenny youngster finally starts his Spinraza treatment

Isaac Brennan (7) who lives with the life-limiting condition Spinal Muscular Atrophy will start his treatment at Temple Street Children’s Hospital tomorrow (Thursday).
On Friday after months of waiting the Brennan family were informed of the good news that the youngster who be able to start his treatment.
His parents Carol and Philip said it was a great relief that their son was finally getting access to the treatment which was approved by the HSE in June.
“The treatment is performed through lumber puncture injections into the spine, so it will be a difficult procedure for Isaac until he gets use to it.
“We told him the news on Friday. He is excited and a little nervous. But hopefully he will be fine. We are so happy to be starting on Thursday,” added Carol.
There are three children, who have SMA starting Spinraza on Thursday.
“We still have 23 kids waiting on confirmation to start, so hopefully this is a positive step forward for everyone to start treatment very soon.
“Isaac goes through intensive physiotherapy and occupational therapy everyday with us to keep his muscles strong and active.
“Access to treatment of this drug would help improve Isaac’s strength and possible ability to walk and potentially increase his life expectancy. We are delighted that he is finally getting,” she added.
Getting access to Spinraza has been difficult and last year Isaac and his parents travelled to the Dáil on to protest along with other families living with SMA and demand access to the life-saving drug.
The matter was also raised in the Dáil on numerous occassions and the Kilkenny hurling squad also came out and publicly supported the campaign.
In June the drug was approved by the HSE for the affected children but to date it has not been readily available.
“Spinraza is proven to be 95% effective and it will give Isaac the potential to walk and to have a longer life span and possibly it will stop the disease from progressing. We just want him to enjoy as normal a life as possible,” added his father, Philip.
A HSE spokesperson said that 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."