Personality: May 2016
05/13/2016 08:00AM ● Published by Aimee Cormier
A Mom On A Mission
By Amanda Jean Harris / Submitted Photos
"I don’t know how she does it” must be something Elise Faucheaux hears pretty often. The mother of two and New Iberia native has it all — family, career, faith. Life isn’t perfect, but she seems to be constantly perfecting the balance of caring for a family, growing a career and investing in her beloved community. And all while launching a nonprofit to fund research for a disease that’s hitting close to home.
“I was born and raised in New Iberia and graduated from Catholic High in 2002 and moved to Lafayette,” she says.
Faucheaux earned a degree in accounting from UL Lafayette and later her CPA license. She is an accountant and worked in Lafayette for more than 7 years and lived in Youngsville. But, in 2014 she headed back to her hometown to raise her children with her husband Blair.
“I knew I wanted my sons to be raised here in a tight knit community,” she says.
Faucheaux’s oldest son Hunter attends St. Edward School and until just recently Faucheaux served as the treasurer of the PTO there.
“I resigned yesterday,” she says at the time of this interview. “I’m quitting pretty much everything outside of work because I want to start a nonprofit for Usher Syndrome.”
Usher Syndrome is a genetic disease that has a variety of forms (12 to be exact) and can lead to deafness and blindness. Referred to as an orphan disease because of its rare nature, Usher is not a disease many have heard of or understand. Faucheaux is working to change that. In fact, she didn’t know her own son had the disease for some time.
“Hunter was born profoundly deaf,” she says. “He didn’t pass the newborn hearing test.”
Faucheaux and her husband were told it was probably just fluid and while Faucheaux’s first cousin had Usher she didn’t realize that was even a possibility for her own son.
“I was uneducated, and I had no idea it was genetic and blew it off for the whole first year,” she says.
It turned out the hearing test failed wasn’t due to fluid. Hunter was born profoundly deaf. He didn’t sit up on time or crawl on time either. He didn’t even walk until he was 20 months old. He was not only born deaf, but he also had severe balance issues as a child. He received a Cochlear implant at age 1, and immediately began intensive auditory verbal and speech therapy.
“We both carry it and we didn’t know it,” she says of her herself and her husband who carry the gene that causes Usher Syndrome.
The particular variety is especially relevant to the region. While many diseases have nothing to do with geography and heritage, Usher Syndrome has 12 varieties and the one Hunter has, Usher 1C, is very specific to Acadiana.
“The ironic part is that he has the French Acadian strain of the gene,” she says.
In fact, more than 20 percent of true Acadians carry the gene. When a carrier joins with another carrier their children have a 25 percent chance of developing the disease. She has a second son, 2-year-old Harrison, who does not have Usher Syndrome.
When Hunter was around 6 months old she heard someone mention Usher Syndrome and the balance issues it can cause, and it hit her for the first time.
“But what are the odds my husband and I both carry the gene?” she asked herself.
Faucheaux got educated and then they began testing after his first birthday. They discovered what Usher meant and learned that in addition to deafness, blindness was likely on the horizon.
“He currently receives speech therapy twice a week, but he speaks exceptionally well. Hunter and our entire support system has put in so much work to get him where he is today,” she says.
While Hunter’s speech and hearing are on track, the next hurdle for those with Usher Syndrome has motivated Faucheaux to action — vision impairment and eventual blindness.
“It can start around 7 or 8-years-old,” she says.
While Hunter is still young to face vision loss, they are monitoring it with a retinal specialist and began taking pictures of his eyes a year ago and returned recently to see if there was any change. There was, thankfully, no change.
“They can see the signs of retinitis pigmentosa although it hasn’t progressed,” she says.
Those first signs from testing show a thinning of blood cells. And while Faucheaux is continuing to pray for a miracle and no progress in vision loss, she is also taking action to fund research.
“They’ve started research on the vision aspect of Usher at LSU in New Orleans and they think they have possibly found something, but are not yet sure it would benefit him,” she says. “It’s a $9 million process that needs to be funded.”
While Faucheaux loves the work she has done with other causes, it is this one that will now occupy much of her effort.
“If I don’t do it nobody is going to do it,” she says. “I’m Hunter’s biggest advocate. I plan on putting all else aside and do what I need to do to start a nonprofit. Even if it doesn’t benefit Hunter, hopefully it can benefit somebody.”
When she met researchers with LSU she said they explained the only way to get funding for the effort would be via grassroots efforts. “Touching people willing to find a cure,” she says of the researchers.
They began a fund with Community Foundation of Acadiana so that people may donate — Usher in Sight and Sound.
And now she’s taking it to the next step. It’s just the sort of thing Faucheaux would do according to those that know her best. When she was nominated for a profile the submission noted how the New Iberia woman gives 110 percent to whatever she does.
She sees a need in the community, a way to make something better and works with others to make it happen. It’s this attitude that took her from a women’s event with the chamber to a new organization for the ladies of New Iberia.
“Last year, the Greater Iberia Chamber of Commerce hosted a women’s-only INSPIRE event. It was for working women in Iberia Parish. At the end of the conference, they challenged us to leave there and make a difference in some aspect of our community through leadership. So Kallie Landry (owner of The Gym in New Iberia) and I started a women’s networking movement called Spark Iberia,” Faucheaux says. “We know that after the Chamber’s INSPIRE conference, women in our parish wanted more of what they got —more meeting, more face to face, more networking. We are here in New Iberia to stay, and we are constantly looking for ways to improve work and family life.”
Whether it’s helping a cause near and dear to her heart or helping others in the business community, Faucheaux is focused on one foundational thing.
“Our mission is to keep the families of New Iberia, in New Iberia,” she says.
In the process of facing a child with a syndrome that has little research and a prognosis that may leave some moms feeling discouraged, Faucheaux has found a new kind of outlook on life thanks to her faith.She recalls a Foundation Fighting Blindness event she attended in which a blind man spoke about his childhood. The man said his mom didn’t know how to raise a blind kid so she simply raised a kid.
“There is still life,” she says. “It doesn’t have to be ‘you’re blind and you can never do anything.’ People who live with it have the potential to be successful and happy.”
While depression can be one of the most serious side effects of Usher, Faucheaux and her husband are doing whatever they can to lay a strong foundation for Hunter.
“We want to get him to where he is very sure about himself so if he faces issues it doesn’t get to him and he has great self esteem,” she says. “I don’t think I’m more faith filled than anybody else. I’m always looking to advance my faith. I believe in miracles and people have said he’s going to be our little miracle and he’s not going to ever lose his sight. I have to have faith for it to really happen. If I want anything in this world the most it’s that he will not lose it … he was given to us for a reason.”
Yet, Faucheaux says when she thinks of what she wants most for Harrison and Hunter it is not that they are perfect or hugely successful by the world’s standards.
“I pray for a cure every day, but I want them to have happiness no matter whatever life may bring. I can’t say I want them to be astronauts or professional football players. I just want them to have values and to be happy, and to respect and always be kind to those around them,” she says. “Because you never know what cross someone else has to bear.”
Faucheaux has served as a member of Iberia on Tap, Les Jeunes Amies, a volunteer at Heart of Hospice, a founding member of Spark Iberia, and serves as a member of the Board of Directors for the Usher Syndrome Coalition. So how does she do it all?
“I always take a little ‘me time,’ it’s good for the soul and benefits everyone around me, most importantly my family,” she says.
Whether it’s traveling or exercising, she makes time to keep herself in check. She and her husband Blair most recently ran the Zydeco Half Marathon in Lafayette, proudly sporting their Usher Syndrome T-shirts.
“Awareness is key,” she says while getting choked up. “And I thank you for the opportunity to share our story.”