Felix was born with Microtia Atresia, a malformed right ear and absent ear canal. Please help us get him to the US for life-changing surgery
Auckland
When Felix was born on the 31st March 2015, it was evident there was something different and very special about him as he was born with a congenital condition that occurs in only 1 in every 10,000 births, called Microtia Atresia. The name Felix, meaning ‘Happy’ and ‘Lucky’ seemed the perfect name for our special little man.
Felix has no ear canal on his right side and cosmetically his external ear did not develop properly. Consequently he has a moderately severe conductive hearing loss and needs to wear a hearing aid.
When Felix was born we referred to his right ear as his 'lucky ear' in reference to the movie "Finding Nemo", to try and explain to his brother Xavier and sister Mackenzie, why their little brother's ear looked different to theirs.
As parents we felt lost. There was very little support offered to us and we struggled to find information about the condition. No one could tell us what the future held for our little boy and having never heard of the condition, we feared the unknown.
We then found out about a Microtia Conference being held in Brisbane in September 2015 and with the help and support of our families, we travelled there to meet expert surgeons from the US. It seemed that at last our questions had been answered and that there were options available for Felix.
The long-term options for surgery in New Zealand are limited, and will only be able to be done when Felix is at least 10 years of age when rib cartilage surgery can be considered. Not wanting Felix to be disadvantaged by this timeframe, we’ve decided that we would like to pursue Medpor surgery, which can be done from the age of 3 but only in the US and has quite a hefty price tag. As parents, we believe that this is the best option for our little boy to enable him the opportunity to hear well and to fulfill his potential in life.
In the US both surgeries can be performed at the same time to reconstruct the ear canal and the outer ear, however the fee for combined Microtia and Atresia repair is $78,000 USD (approx. $120,000NZD). This does not include flights or accommodation and other expenses.
Our concerns for Felix's future are two-fold. We are anxious about the affect his hearing loss will have on his listening comprehension and speech development. In addition, we fear the psychological effects of being 'different' to other kids and how his peers may react to it. For these reasons we are working towards the goal that Felix may be able to have the combined surgery before he starts school.
Anyone who is a parent knows what it’s like to want only the best for your child and it is our mission to raise enough funds to be able to provide Felix with the opportunity to be able to fulfill his potential in life.
All your donations are greatly appreciated no matter how small, it all counts!! We thank you all for your support in helping us get our little boy to the US for life-changing surgery, the chance to hear and to live his life to the fullest.
TVNZ One News at 6
https://www.tvnz.co.nz/one-news/new-zealand/kiss-rocker-reaches-kiwi-baby-born-without-eardrum
NZ Herald
www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=11530359
www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=11530176
http://www.nzherald.co.nz/life-style/news/video.cfm?c_id=1503081&gal_cid=1503081&gallery_id=154998
Stuff.co.nz
Felix is our youngest child, he has an older brother Xavier (8) and sister Mackenzie (5)
***UPDATE*** 10 September 2017
Almost two years on since we started our journey, we are well on our way to reaching our goal of $120,000 NZD!! To date we have raised $70,000 NZD which is being held safe and sound in a special account for Felix. The funds can only be withdrawn when it is time to book his surgery.
We have held a number of different fundraising efforts over the past 2 years and we haven't finished yet! In a couple of weeks we will be holding The Wellington Spring Charity Ball and work is underway for another big fundraiser in Auckland in the new year.
Thank you ALL for your never-ending support, kindness and generosity over the past two years we could never have made it this far had it not been for you all. We are extending Felix's page for a little while longer as we haven't quite accomplished our goal yet... Best wishes to you all..xx..
Thank you so much for this Tina! Your kindness and support means so much. Sorry we missed you while you were here but hope all is well in sunny London. Blessings x
Thank you Al, you are too kind! Hope all is well. We really appreciate the support x
You are much too kind Mr Q!! Forever grateful for you and your support. Blessings x
Thank you Tui! We are so grateful for your never ending support for Felix. It means so much to us. Love to you and the whanau xx
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