Today, 8th June 2019, marks 2 years since Zac started his miracle medicine, spinraza!! 2 years ago we watched our little warrior get wheeled into theatre to have his first intrathecal injection administered. 2 years ago we were terrified. 2 years ago there were tears. 2 years ago we were in the middle of a whirlwind. 2 years ago there was fear for the future, we didn’t even know if there was a future. But 2 years ago the doctors took a risk, they gave our boy a chance, they gave him a lifeline. And in amongst the turmoil of feelings in our hearts that day there was an overwhelming feeling of hope. We made it to treatment and that meant we had given Zac the best chance. Just 2 years ago – it seems to have gone by in a flash and yet it seems like we’ve been living this sma life forever.
The last year has been a merry-go-round of appointments, meetings, medicines, feeds, physio, nursery, phone calls, health professionals, laughs, tears, tantrums, worries, smiles – sometimes all of this in one day!! But it’s also been a year where we’ve grown stronger, braver, crazier and happier as we all adapt continuously to this different kind of normal life we have.
When Zac started treatment 2 years ago we were asked so many questions; how will this medicine work? What will it do for Zac? Will it cure him? Will you still have to lift him? Will he still be in hospital a lot? Will he still need his feeding tube? Will he still be in a wheelchair? Will he ever walk? The answer I always give is that we just don’t know what the future holds, no-one ever does, but what we do know is that we take each day at a time and our goal has always been to make life as happy as can be for our boys. We never had any expectations for treatment when Zac started, we just wanted him to have the chance at life. We just wanted him to achieve all he could achieve. We wanted him to be able to take part in family life and we wanted him to be happy and loved for the incredible boy he is. We think spinraza has done that and more for Zac!! Over this year we’ve watched him get stronger & stronger, we’ve cheered him on as he’s gained new skills, we’ve championed him as he’s met new milestones and our hearts have burst with pride every time he’s celebrated an achievement.
We made this little video (link below) to show how Zac’s second year on spinraza has been – we hope it shows hope; that no matter what situation you find yourself in life can be lived, maybe a little differently at times but it can be lived.
Thank you to everyone who continually supports us as we live our different kind of normal.