Brave Kilkenny boy (7) to start life-changing drug treatment this week
A young Kilkenny boy, who suffers from a condition that affects his central nervous system, motor functions and progressively weakens his muscles, is finally starting a drug programme that could change his life.
Seven-year-old Isaac Brennan, who lives with Spinal Muscular Atrophy, will start Spinraza treatment at Temple Street Children’s Hospital in Dublin later this week.
Isaac’s parents Carol and Philip were contacted last Friday and given the good news that the treatment will begin this week.
“Thank God. Finally,” Isaac’s mother Carol told KilkennyNow.ie.
“We got there in the end. It was six months waiting since the drug was approved. It’s been too long.
“We are thrilled. Isaac is thrilled. He’s a little bit nervous but that’s to be expected.”
Spinraza treatment is quite intrusive. Isaac will get his first dose of treatment this Thursday that will be followed by three more injections over the first eight weeks.
“The injections are performed through lumbar puncture into Isaac’s spine. After the initial four injections, it’s one dose every four months.
“The doctors in Temple Street will keep monitoring Isaac to make sure the treatment is having an effect. We know going into this there is an exit-criteria – if the doctors don’t see any improvement in Isaac’s muscle function or strength, he will be taken off it.
The call confirming the treatment came out of the blue. Carol was confident it would come but believes local political pressure helped speed up the process.
“We got a phone call from a nurse in the Neurology department of Temple Street on Friday to let us know that Isaac was starting and due to attend the clinic this Thursday. It all happened so quickly. In the end, it came out of the blue.
“We knew the treatment was going to happen at some stage, but I do think the added pressure applied by the local TDs Bobby Aylward, John McGuinness and John Paul Phelan probably helped.”
Up until recently, issues inside Temple Street hospital, being able to provide a unit for the 24 children who require Spinraza treatment, remained unresolved. Carol and the family were getting impatient.
“We were getting proposed date of when the treatment might start, but nothing was ever confirmed, it was very much up in the air.
“When the consultant spoke with the bed management team to get things up and running, there were concerns raised about the bed resources and the resources required to start the clinic and sustain the clinic going forward.
“A little bit of political pressure did help to get the straightforward cases started, of which Isaac is one. We are lucky, Isaac doesn’t have a rod in his spine, so he hasn’t developed a severe case of scoliosis yet. He can go under local anaesthetic
“There are still 23 children waiting to start treatment. That’s not good enough, they should have it all started. We need to keep up the pressure,” Carol said.