On the weekend of 4 & 5 July 2022, it was a great pleasure to finally meet again with the Sydney Microtia and Atresia community in person. It’s been a few years of online conferences, but seeing families again able to chat casually and share their experiences was fantastic.
There have been a number of recent advances that offer great promise for those living with microtia and atresia. One close to my heart is 3D printed cartilage ears. In June 2022 the first patient in the USA was implanted with an ear made from their own cells. I’m one step closer to fulfilling my promise to Sebastian that 3D printed cartilage could one day be a treatment for him!
On the hearing front, some major good news this year was the TGA-approved use of the OSIA device from Cochlear. It’s the most advanced bone anchored hearing device on the market.
If you’ve been following my microtia experiences over the last few years, you’ll know about Luke and his new big ear. He’s still pretty happy with it! After receiving his new ear in late 2021, he was back into his active life quickly, swimming in the family pool 9 weeks after surgery.
He was the star of the show on Saturday, cracking everyone up when he heckled his dad’s speech up on stage. As he shouted from the audience, I could see he has big dreams to become his dad’s mini-me!
Simone and Chelsea Cheadle expressed with great honesty the difficulties of being a parent advocate and self advocate. I don’t think there was a dry eye in the whole place, and it emphasised to me the importance of recognising our differences and that it is ok not to feel ok all the time.
We’re all so grateful to Simone for keeping these conferences running through thick and thin! She started microtiaatresia.com.au to help families find information and support.
I can’t wait to do more of these conferences and continue spreading the word to more amazing families about their ever increasing options for living with microtia and atresia in Australia in 2022 and beyond.
Watch out for the next conference in Brisbane on 17 September 2022.
