On the 19th April 2024 we found out we were pregnant and expecting our first bundle of joy to arrive at Christmas. We were so bloody excited, little did we know this was the cruel start of our roller-coaster and heart destroying ride 💔.
My GP asked if we wanted to do reproductive screening to check for genetic or chromosome conditions. Knowing both corey and I have no history of any conditions I thought doesn't hurt to check.
Little did we know I came back as a carrier for spinal muscular atrophy (SMA) which then lend to corey being tested. This chance is 1 in 10,000 that one of us is a carrier. Coreys result then came back in and he is also a carrier. Which means there is 1 in 4 chance it can affect our baby. 75% baby would be fine and 25% baby to be affected. We thought we would be right being higher positive outcome.
SMA is terminal for all who were affected with it being advised our baby wouldnt live passed 1 years of age and only limited early stages of a cure at the moment meaning we could never give our baby the life she deserved.
We've had many appointments and tests from obstetrician, professor in clinical genetics, genetic counsellors and the list goes on.
From having the CVS our baby was growing well and looking good. We then had to wait 1-2 weeks for the results to whether our baby was affected or not. The wait was what hurt. A week later I had the phone call from our obstetrician that sadly our baby was affected.
Words cannot describe the pain that ripped through our hearts in that moment.
For us we had already decided that if our baby had SMA we would TFMR. We knew that there was no real cure, we knew what we had to do. Our choice was made out of love. It was our role as parents to protect our child from pain and suffering, even if it meant pain for us.
On the 4th July 2024 at royal women's melbourne it was the day to say goodbye to our angel, one of the hardest, heart and soul breaking as parents to saying goodbye to our beautiful girl Lara at 16 weeks.
We wished we could be anywhere but where we were. We had moments where all we wanted was to have this baby and hold her in our arms but we knew that the happiness that we would feel in that moment and come at the expense of a short life of potential suffering for our beautiful girl.
Rest easy our beautiful angel Lara, you will always be with us 😇 💔❤️❤️🩹
Your donation will help keep labs running, research advancing, and hope alive for kids who need it most.
Together, we can make a difference.
Join me. Share this message. Donate. Thank you!
On the 19th April 2024 we found out we were pregnant and expecting our first bundle of joy to arrive at Christmas. We were so bloody excited, little did we know this was the cruel start of our roller-coaster and heart destroying ride 💔.
My GP asked if we wanted to do reproductive screening to check for genetic or chromosome conditions. Knowing both corey and I have no history of any conditions I thought doesn't hurt to check.
Little did we know I came back as a carrier for spinal muscular atrophy (SMA) which then lend to corey being tested. This chance is 1 in 10,000 that one of us is a carrier. Coreys result then came back in and he is also a carrier. Which means there is 1 in 4 chance it can affect our baby. 75% baby would be fine and 25% baby to be affected. We thought we would be right being higher positive outcome. SMA is terminal for all who were affected with it being advised our baby wouldnt live passed 1 years of age and only limited early stages of a cure at the moment meaning we could never give our baby the life she deserved. We've had many appointments and tests from obstetrician, professor in clinical genetics, genetic counsellors and the list goes on.
From having the CVS our baby was growing well and looking good. We then had to wait 1-2 weeks for the results to whether our baby was affected or not. The wait was what hurt. A week later I had the phone call from our obstetrician that sadly our baby was affected. Words cannot describe the pain that ripped through our hearts in that moment.
For us we had already decided that if our baby had SMA we would TFMR. We knew that there was no real cure, we knew what we had to do. Our choice was made out of love. It was our role as parents to protect our child from pain and suffering, even if it meant pain for us.
On the 4th July 2024 at royal women's melbourne it was the day to say goodbye to our angel, one of the hardest, heart and soul breaking as parents to saying goodbye to our beautiful girl Lara at 16 weeks.
We wished we could be anywhere but where we were. We had moments where all we wanted was to have this baby and hold her in our arms but we knew that the happiness that we would feel in that moment and come at the expense of a short life of potential suffering for our beautiful girl.
Rest easy our beautiful angel Lara, you will always be with us 😇 💔❤️❤️🩹
Your donation will help keep labs running, research advancing, and hope alive for kids who need it most.
Together, we can make a difference.
Join me. Share this message. Donate. Thank you!
"Bake Sale fundraising"