Xander (Alexander) is a cheeky 3 ½ year old boy who is strong, independent and constantly causing mischief. He has an older brother William (5) and younger sister Isabella (2) who adores him and loves to follow him into just as much mischief. He is such a gorgeous little boy with the most amazing smile that would just melt your heart. Unfortunately that smile is sometimes hard to find as there are many tough days.
Xander was born on the 22 Feb 2010 with Microtia and Atresia affecting his left ear. Microtia is an incomplete or underdeveloped ear and Atresia is the absence of the ear canal and ear drum. What this means for Xander is that he has moderately severe hearing loss on his left side and cosmetically he has a ‘small’ nugget like ear.
When Xander was born (in Townsville) it was a complete shock to see that he had a little ear. Even though we had a very clear 3D scan of Xander before he was born, the cheeky boy was hiding his little ear with his hand. That first night was quiet stressful as nobody at the hospital knew what it meant and if any other issue were there that we couldn’t see. It was our Audiologist the next day that was able to tell us that Xander had Microtia/Atresia with a unilateral hearing loss.
Unfortunately the ENT we saw in Townsville didn’t know anything about it which was disheartening.
Not long after that we learnt more from our Geneticist who flew in from Brisbane. He happened to be researching in that area with a keen interest in Microtia/Atresia and related syndromes. He was able to provide us with a lot of information which was exciting for us to be able to talk to someone who knew anything about it.
Xander was then assessed by Australian Hearing and was given his first bone conductor hearing aid at the age of 6 months. Since then he has had regular checkups with Australian Hearing to monitor the hearing on his good (right) side, as well as maintain his hearing aid. It has been a challenge to get Xander to wear his hearing aid, but we are getting there and the difference it makes in his speech and awareness of sounds is just amazing.
Xander went on further to receive early intervention through Hear and Say via their outreach program, then to Taralye when we moved to Melbourne in January 2012. He has slowing been falling behind with his speech so we now see a speech pathologist to help Xander improve.
Recently Xander was diagnosed with high functioning Autism. There have been many tough day with Xander and we are hoping now with this diagnosis that we are able to help Xander the best we can with all the new information and support we are able to get. It has put even more importance to improve Xander’s hearing in turn improving his communication. This will help easy his frustration.
We as a family have attended the Microtia and Atresia annual conference in Australia twice since Xander was born. There we have learnt so much and been able to talk to many very talented doctors. Through this we have been able to make contact and learn from other family going through the same thing. No amount of words could express how grateful we are to Simone from Hear and Say who organise this conference each year. With the help from this conference and our own continuous research we were able to come to a decision on what we believe is the best option for Xander to be able to reach his full potential.
This year Xander was able to get a CT scan (under General Anesthetic) to assess if he is a good candidate for ear reconstruction. We were over the moon to discover that Xander is indeed a good candidate for the operation. The Combined Atresia and Microtia (CAM) surgery is very complex (10 hour surgery) and is only preformed in the US by Dr Joseph Roberson (Otologist) and Dr John Reinish (Plastic Surgeon). Dr Roberson performs the Atresia repair which he will create Xander a new ear canal and ear drum to achieve normal-near normal hearing. Dr Reinish performs the Microtia repair which using a synthetic ear framework called Medpor and complex skin grafting procedure to build a new ear. We have met both Dr Roberson and Dr Reinish each time we have attended the Microtia and Atresia Conference which they fly over each year from the US to attend and present.
This comes at a high price of $75,000 USD for the surgery only, then there is the price for travel and accommodation for the recovery period (4-6 weeks), which will cost approximately $25,000. We are hoping to raise as much of the funds totaling to $100,000 so we can to give Xander the gift of hearing. Xander is now 3 ½ years old and the optimal age to perform this operation to gain the most benefit is between 3-5 years old.
Jeremy and Louise Rogerson would like to thank you in helping us achieve our goals for our son.