Changing Faces, Changing Lives
Lucas’ story
Brave Lucas was born with Hemifacial Microsomia and has undergone 6 surgeries so far. Despite the challenges, Lucas and his family are grateful to be able to access the treatment and support for Lucas to be able to live to the full.
My name is Lucas, I am full of energy and love to always be on the go! When I was born, my right ear was curled up. I spent some time in the neonatal unit because I had pneumonia. While I was in the nursery, lots of doctors visited me and after many assessments, they told my parents that I have a craniofacial condition called Hemifacial Microsomia which is sometimes called Goldenhar Syndrome. It also effects my jaw, face nerves, neck & shoulder. Mum and dad had some tests done too.
I have had lots of appointments from when I was born to see that I am growing up ok. As I have gotten older the appointments have become less. This is great because going to lots of appointments can get annoying.
My doctors and the craniofacial team are the best and I feel very lucky that they have been looking after me. I have had a few surgeries so far. Two of these were ear reconstructions on my right ear and a muscle release on my neck as to help with my head tilt, which is part of my condition. I may need more surgery when I am older.
With my condition, I cannot hear in my right ear. I had a hearing aid magnet implant surgery last year which now makes it easier for me to wear my hearing aid. Before this I did not wear it all the time because it was on a headband, and it pulled my hair. I am a bit behind with my reading and writing at school. I like doing Math, Japanese and PE the most. I see a teacher of the deaf to help me with my literacy.
Living with my condition has been good. I enjoy my life. I love playing basketball, football and cricket, any sports really. I also love going fishing and taking my slot car and RC car out racing on the weekends. At home I am normally playing anything and everything with my best friend and sister, Liana. I also play with my dog, Lexi, my cat Leo or my rabbit, Alvin. I have a great group of friends at school. I go away to Victor Harbor every year with my family. My favourite TV series is ‘Wild Croc Territory’ and my favourite food is toast with Nutella and ravioli Bolognese. I love going to watch the 36ers and Port Power and my dream is that I can do the run out with them before a game or the coin toss. Connor Rozee is my favourite player.
Having Hemifacial Microsomia / Goldenhar Syndrome has not stopped me doing anything I have wanted to do. Sometimes other people ask about my ear, I just tell them “I was born with it like this”, and they usually say “OK” and move along. Only one time another kid was being mean about it. At first it upset me but I just ignored them. Another time, a kid asked me “how did your ear get broken?”. I laughed and said “Oh no! What do you mean my ear is broken?” and ran off. The other kid just stood there confused. It was very funny.
Lucas has some great advice for other cranio-kids:
“Sometimes I get upset about having Hemifacial Microsomia, all the surgeries and I wish I wasn’t born with it, but then I remember we are all different and special in our own way. I feel happy to just be me!”