Isaac (6) who is pleading with the Minister to give him the medication he needs
The plight of a six-year-old boy, who is confined to a wheelchair and has a life expectancy of just 20, was highlighted in Dáil Eireann.
Deputy Bobby Alyward has asked the Minister for Health, Simon Harris to give Isaac Brennan (6) from Kilkenny City access to a drug , Spinraza.
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.
“I had written to the Minister previously regarding the provision of the drugs Spinraza for children suffering from spinal muscular atrophy, more commonly known as SMA.
“I have also previously raised the matter here in the Dail along with other party members. It has been acknowledged by the HSÉ that the drug works and works well and it is now solely an issue of cost.
“ A number of the affected families attended the demonstration at the gates of Leinster House in September, one of which is from my own county of Kilkenny.
“ They are waiting in desperation for an answer about this drug, which will make a huge difference to the life of their young son. Can the Minister provide an update on the provision of funding for this drug? Has the HSE scheduled any further meeting to discuss this drug? As I said, we’ve raised this before. We’ve mentioned it several times. We’re being told it’s being looked at. It’s time now for action, not talk,” said Deputy Alyward.
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.
His parents 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.
A decision is expected over the coming weeks in relation to access to the drug.