Jazzy's Story

Jazzy is a beautiful, bright and cheeky 5 yr old girl. But Jazzy is no ordinary little kid…Because before she was even born, she faced a huge battle.

When her mum, Lauren, was 32 weeks pregnant, doctors noticed that something wasn’t right. Her little baby had fractures all over her body. Doctors told her that Jazzy had Osteogenesis Imperfecta, and that she wouldn’t survive after birth.

‘I was totally numb… it was overwhelming. We didn’t know anything about this condition’, said Lauren.

Better known as Brittle Bone Syndrome, Osteogenesis Imperfecta is a condition that prevents bones from developing normally and makes them incredibly fragile so that the smallest things can cause them to fracture – it’s very painful.

‘Those weeks waiting for Jazzy to be born were really scary. We didn’t know what to expect'.

Finally, Jazzy was born via C-section and despite the odds, she survived and was taken immediately to intensive care. For the first 4 weeks of her life, Jazzy was in high risk care, fighting for her life.

Her parents had to be trained to handle her, because the simplest tasks like bathing, changing or even hugging Jazzy could fracture her bones. She had to have regular infusions of medications. Over her short life, 5 yr old Jazzy has had 15 surgeries.

She has had rods placed in all her long bones, has had to correct numerous fractures and has had two operations to insert a port for her infusions… she had to have her first port moved because her spine was so curved, it pushed her heart out of place. And now, Jazzy is preparing for her biggest battle yet.
 

She has spent the last 8 weeks in a halo to correct severe scoliosis and will undergo surgery to remove the halo and put a rod in her spine on the 7^th of September.

Although she is a bit nervous about the surgery and hates needles, Jazzy is really looking forward to being able to get around without the halo. She is an energetic, fun loving girl and doesn’t like to be held back by anything!

She wears a superhero costume to every procedure she’s had because she believes ‘superhero’s kick butt in surgery’. In the past, she has faced her operations as Batman, Cat woman and Twilight Sparkles.  This time, she is going in as Princess Sofia because she’s very brave.

We think Jazzy is even braver. She is funny and smart and takes on every hurdle with a big, beautiful smile.
As we get closer to Ks for Kids, we are reminded why we are taking on this challenge, and why raising money for research is so important.

Because children like Jazzy are facing battles that no child should have to, and we want them to know that they are not alone and we are right behind them, fighting with them, every step of the way.