After a healthy, uncomplicated pregnancy and birth, our beautiful girl Oakley was born on the 11th of October, 2020. She was a healthy, gorgeous bub who seemed to be thriving, passing all the medical and health checks with flying colours and feeding like a pro. Fast forward 8 weeks and we found ourselves in the Emergency Department at Queensland’s Children’s Hospital receiving a diagnosis of Spinal Muscular Atrophy (SMA) for our beautiful little girl. We were told that without treatment, she wouldn’t make it to 6 months.
To say our world was turned on its head and our hearts shattered is an understatement. Oakley has Type 1 SMA, the most severe. We are so grateful to have access to treatment as many babies and families (only a few years prior) didn’t get that chance. But treatment is new, with outcomes very unknown and there are new treatments currently only available overseas. Unlike overseas, SMA is not included on the newborn screening test in Queensland, and we are perplexed as to why it isn’t, when the knowledge, research and technology exists.
If bubs are treated before symptoms begin, they can live a healthy life almost unaffected by SMA. We are failing babies, like Oakley, every day until more is done. Like many of you, we’d never heard of SMA either. We had no family history and no idea of the symptoms to look out for. We even have another child without SMA, Oakley’s big sister, Arabella, so we had no idea we carry the mutated gene – we have since learned that 1 in 35 people have this gene. This really can happen to anyone.
Through this campaign we hope to raise awareness of SMA so that others don’t have to go through this heartache. Many people have been working on improving outcomes for SMA and we hope to join them in their mission. We want to share Oakley’s adventures with you all as we are so lucky to have so many people looking out for our little girl.
Thank you for being here x Kate and Grant