Zarliya’s Story

Zarliya JacksonMy name is Zarliya and I have just turned two. I am a heart warrior, a princess and a beautiful soul, and I just happen to have Trisomy 21 (Down Syndrome). My Mumma says that from the moment I was made the sun shone brighter, the stars twinkled longer and her heart beat stronger. I have two older sisters, Kiarra who is eighteen, Jamayka who is almost fifteen, and my big brother Jaspa who has just turned four.

My journey began when I was born five weeks early because my Mumma’s placenta stopped working, but she says it was because she couldn’t wait any longer to meet me. I was taken straight away to The Royal Children’s Hospital because I was born with a broken heart. I was born with an AVSD (Atrioventricular Septal Defect) and TOF (Tetralogy of Fallot). Basically I had several really big holes and a few other complicated things as well. I was born strong – I was in hospital for only six days even though I had arrived early.

Adjusting to life at home was easy until I was six weeks old, when the cold I had caught developed into RSV (Respiratory Syncytial Virus) and Pneumonia. Mumma and I were in hospital for six weeks. Everyone missed us and it was really hard on everyone but we all made it through. After this I was in and out of hospital with viral infections for several months. When I was four months old, I started having complications when I cried. It must have been scary for my family to watch me go blue every time I cried. So my doctors decided to admit me to hospital again for my heart surgery, but due to my size and other complications in my heart, they couldn’t repair my heart at this point in time. They decided to insert a shunt to redirect blood flow until I became bigger and stronger. It was then that I got my first zipper.  Life over the next nine months was difficult, trying to keep me healthy and happy until my big surgery.

The 19th April 2013 was my heart day. Mumma and Daddy said this was the longest day of their lives. I was in surgery for nine hours and my big sister Jamayka stayed with Mumma at the hospital to help distract her. In true princess style, I was out of ICU in less than twenty four hours and discharged from hospital in six days. Now I have a new zipper. Since my surgery, I have learnt to sit, crawl, stand and about four weeks ago I started to walk. Recently I have even learnt to climb stairs.Zarliya Jackson 2

Being two is so much fun. I love to dance and sing, but the best thing is Mumma’s cuddles, Daddy’s kisses and chasing my big brother. I absolutely adore Peppa Pig and Doc McStuffins, and dancing to The Wiggles, but really I will get down and boogie to anything. My big sisters take me to the playground sometimes and I give them many smiles in return.

Being born with Down Syndrome has not held me back. I have to practise some things a lot and it takes me a little longer to learn, but I always get there in the end. Mumma says I can be whatever I want to be….to reach for the stars and to dream big, and with the love and support that I get from my family, I know I can do anything.

 

Photos courtesy of Living Life Photography – by Sammi J

Victoria & Tasmania