Rare condition a source of strength for Felix
When it comes to making the most of life, three-year-old Felix Taito certainly has a fabulous role model.
Felix and the lead singer of one of the most successful rock bands in the world are both deaf in one ear and have the rare condition microtia and atresia.
Paul Stanley learnt to listen and live with the condition, going on to become the frontman for KISS.
Young Felix has microtia and atresia in his right ear, full hearing in his left ear, and is just starting out on his hearing journey.
Mum Seleta says Paul Stanley is an inspiration.
“Here’s this guy, born with his condition, and look at where he is now. Even for me it was helpful to see what life could be like for Felix.”
Microtia (meaning small ear) and atresia (no ear canal opening) is a rare condition that affects 1 in 10,000 people.
So rare in fact that when Felix was born in March 2015 none of the midwives and doctors in the birthing suite had seen the condition before.
“It was all a bit daunting,” Seleta says.
Seleta says she and husband David, also parents to 9-year-old Xavier and 6-year-old MacKenzie, initially felt “lost”.
“There was no support offered to us in those early days and we struggled to find information about microtia and atresia.
“No one could tell us what the future held and having never heard of the condition we feared the unknown. It was a very unsettling and frustrating start and it was up to us as parents to go out and look for information, help and support.”
During her research Seleta came across Auckland Parents of Deaf Children (APODC), a group run by parents for families with a child with any level of hearing loss, which provided great support to the Taito family.
The couple attended a microtia and atresia conference in Brisbane when Felix was just 6 months old and on top of finding support from fellow families, they were also provided with information from all sides of medical research and opinions.
While they were there, they also learnt about the KISS connection.
“Felix was born in March and KISS was due to perform in New Zealand the following October. We wanted to meet Paul Stanley.”
Seleta painted Felix’s face in the KISS theme and started a Facebook campaign that went viral. The New Zealand Herald picked up the story, The Rock radio station got them in touch with the concert promoters, who contacted the band – who were very keen to meet young Felix.
Seleta says Paul Stanley was “very kind”.
Felix was fitted with a bone anchored hearing aid (BAHA) when he was five months old. Because he has no ear, or ear canal, the device turns sound into vibration which by passes his outer and middle ear. A BAHA is either held on with a headband or special stickers.
Later, Seleta and David started bringing Felix to The Hearing House for Auditory-Verbal Therapy so he could learn to listen better and speak clearer.
The Hearing House works with deaf and hearing impaired children and adults who have cochlear implants, and also runs a hearing aid programme for children.
Seleta says the support the family has received from The Hearing House and Auditory-Verbal Therapist Esther Pakura has been “awesome” and Felix is meeting targets when it comes to listening and spoken language.
“We come along every fortnight and learn the tools of how to interact with Felix to ensure we are providing the best learning environment for him.
“He is starting to use his words and language more and more and we are happy with the level he is at for his age. We owe a lot of that to The Hearing House and the hard work of Esther.”
Felix, who has a love of dinosaur and animal toys, is a confident, outgoing, curious and mischievous little boy and loves meeting new people.
“He also likes to think of himself as a bit of a joker and loves to try and make us laugh at home.”
Seleta says she and David “hope for a happy and successful future for Felix”.
“We hope that as parents we have provided the support and best environment that he needs in order to develop well and thrive in life.
“We fear the possible long term effects of having a hearing loss on his learning and the psychological effects of looking ‘different’ to other kids, but we have never treated him any differently to our other two children.
“We hope that his condition will only serve as a source of strength for him to achieve whatever his heart desires in life.”
Seleta runs a Facebook group called Microtia & Atresia New Zealand Support Group “just in case there is anyone else out there like us that is looking for support” and is also encouraging people to take part in this year’s Loud Shirt Day.
The annual event, with a superhero theme, raises money for The Hearing House and the Southern Cochlear Implant Programme.
Seleta says the kindness and generosity of Loud Shirt Day supporters will go towards making a huge difference in the lives of children like Felix.
“We hope that as many people as possible will get involved with Loud Shirt Day this year so that all the children who are receiving this invaluable support from them will continue to thrive. And who wouldn’t want the excuse to dress up as a superhero for the day?!”
“This will be the third year that Felix's kindy will be getting behind him and supporting Loud Shirt Day. They are especially excited about the super cool superhero theme this year. To get the whole centre involved, David will be getting dressed up as Batman and making a special guest appearance which should cause lots of excitement!
“Felix's siblings, Xavier and Mackenzie, wrote a letter to their school principal requesting that their school get involved with Loud Shirt Day this year and they were very pleased that the school agreed.”
Seleta says her work doesn’t allow for mufti days, but she isn’t going to let that stop her.
“I am thinking of doing a bake sale or similar to get everyone at my work on board. Even if you can’t partake by wearing a loud shirt for the day, there are other ways to get involved at work.”
Felix’s KISS connection
Paul Stanley was born with Grade 3 Microtia, a congenital malformation in which the external ear and middle ear canal fail to develop. The resulting closure of his ear canal, also known as aural atresia, also significantly impaired his hearing.
According to the Ear Surgery Centre of Excellence in the United States Paul underwent several hearing correction treatments in order to cope with his condition and pursue his passion for music. He also grew out his signature hairstyle to prevent people from noticing his ear.
However, his overarching message was clear: With support, determination, and compassionate medical care, microtia and atresia can be overcome.
“Except for bone conduction, I’m virtually deaf on my right side, as there is no access for sound to enter,” Paul wrote in a blog for the CNN.
“To those of you that suffer from some form of hearing loss, take comfort in the fact that many, many great people have succeeded in monumental ways without normal hearing, or any hearing for that matter.
“Hearing loss may be a small pothole in the road, but that doesn’t mean it should stop you from getting where you want to go. I’m living proof!”