Kilkenny parents plea: “We need this drug - otherwise it might be too late”

Mary Cody

Reporter:

Mary Cody

Email:

mary.cody@kilkennypeople.ie

Kilkenny parents plea: “We need  this drug - otherwise it might be too late”

Isaac (6) who is pleading with the Minister to give him the medication he needs

The parents of a six-year-old boy, who is confined to a wheelchair and has a life expectancy of just 20, are pleading with the Minister for Health, Simon Harris to access to a drug for their son and others who live with Spinal Muscular Atrophy.
Isaac Brennan (6) is a bright and bubbly youngster who is forced to use a wheelchair because of SMA. There is medication, Spinraza, which could enable him to walk and extend his life expectancy but it is not currently approved or funded by the HSE.
Isaac’s parents Carol and Philip have decided to speak out and share their story in the hope that it will raise awareness around the urgency that surrounds their son and other children getting access to this drug.
“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.
“Access to treatment of this drug would help improve Isaac’s strength and possible ability to walk and potentially increase his life expectancy,” his mother Carol said.
Isaac and his parents will travel to the Dáil on Thursday to protest along with other families living with SMA and demand access to the life-saving drug.
They are calling on the Minster to approve reimbursement for the life-saving drug Spinraza, which is the first ever approved treatment for the degenerative genetic condition. The drug caused hugely significant improvements in the health and lives of sufferers treated to date.
“It 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.
Fianna Fáil TD John McGuinness will attend the protest and has raised the family’s plight with Minister Harris.
“I am aware of the circumstances of this family and I have contacted the Minister about getting this medication for their son.
“Their child deserves a break as much as any other child and our Constitution states that every child should be treated equally.
“It is not good enough that children and young people are not getting access to the medication they need. It has a huge impact on all the family,” he said adding that it was ‘shocking and terrible’ that children and young people did not have ‘a timely response’ to their urgent need to access certain types of life-saving medication.
“It is simply not good enough in a civilised society,” he added.