Thirteen-year-old Rosie has overcome many obstacles in her young life since being born with a rare and debilitating condition called Amniotic Banding Syndrome (ABS).
As Rosie developed in the womb, fibres from the amniotic sack became loose and wrapped around Rosie’s left arm and leg causing extensive damage to her limbs.
Devastatingly, instead of going home a happy and healthy newborn, Rosie’s arm would require immediate amputation from the elbow.
What’s more, the amniotic bands wrapped around Rosie’s leg caused her foot to be tethered to her calf meaning she would need to undergo extensive treatments to try to save it.
“She spent the first seven weeks of life in hospital and has been a frequent flyer there ever since” says Mum Tiffany. “She’s spent her whole life overcoming the obstacles her condition has created.”
With over 20 surgeries already behind her, last year Rosie had the second of two major reconstructive surgeries designed to give her use of her left leg into adulthood.
This surgery involved doctors fixing a device known as a Butt Frame to Rosie’s leg to bring her foot into correct alignment. Rosie was in the frame for six months, and endured daily adjustments to the device.
Following both reconstructive procedures, Rosie was confined to a wheelchair for six months. This was then followed by more months of intense rehabilitation, leaving Rosie unable to join in her favourite activities like swimming, dance and hanging out with her friends.
The enormity of her treatments has been extremely traumatic for Rosie.
“Rosie has experienced a lot of trauma during these painful procedures and suffers from PTSD. Although she is friendly and often excitable, her anxiety at times has very heavily impacted on her participation at school and during social situations.” says Tiffany.
For Rosie’s family, in particular her younger sister Jordan, living life around Rosie’s many ongoing appointments can be challenging. Meeting everybody’s needs can often seem like an impossible task for parents Tiffany and Mark.
A shining light for the whole family however has been helping Rosie plan her very own Starlight Wish!
Amidst the trauma of her surgery and rehabilitation, Rosie was incredibly excited to learn she would be granted a Starlight Wish...and knew immediately what to ask for.
“Snakes!” says Tiffany. “Rosie absolutely loves snakes, so she did her research and discovered Queensland has two zoos containing lots of snakes. She wants to hold snakes and take photos with them, so we are off to Australia Zoo and Snakes Down Under to see as many snakes as we can!”
After all the challenges Rosie has faced, it means the world to Tiffany and Mark to see her so excited planning and talking about her Starlight Wish. They wholeheartedly believe having her wish to focus on has helped Rosie get through her recovery faster, and in a better frame of mind.
Looking forward to embarking as a family on Rosie’s Starlight Wish, they have this to say about her life-long journey;
“Rosie’s diagnosis has always been a part of her life. After almost losing her, having her in our lives makes everything worth it for us. We admire her strength, resilience and tenacity everyday and it means so much to all of us to be able to celebrate the excitement of her Starlight Wish with her.“
