July 11, 2016
Can you imagine… your 5 year old son’s prognosis of a rare genetic “orphan disease” reveals the fact that he will start losing his night vision as early as age 7 or 8. Can you imagine… having to tell your son that he was born with Usher Syndrome, through no fault of his own, and that as early as his teenage years, this disease could rob him of his ability to see. Can you imagine… you, your child, your friend, someone you love having to take a class to learn brail and how to use a white cane, before he hits adulthood?
I can because on March 12, 2011, my son, Hunter, was born with Usher Syndrome, the world’s leading combined deaf/blind disease. My husband and I soon learned that we are both carriers of this French/Acadian strand of the gene (Type 1C), and we had passed it on to our first born son.
Two weeks after Hunter’s first birthday he underwent surgery and got bilateral cochlear implants to correct the deafness aspect of Usher Syndrome. Today, he is a fully hearing, speaking and thriving 5 year old in a mainstream school and loving life to the fullest extent.
Since Hunter’s diagnosis in May 2012, I have wanted to start a foundation to educate people, create awareness about Usher Syndrome, and to assist in finding a cure for this debilitating prognosis. So here we are, 4 years later and this dream of mine has become a reality, as well as a reality check. Time is ticking, and there’s no stopping it. This is a grass roots effort to educate others on this disease that affects the people of Acadiana, the people right here surrounding us, in a heartbreaking way. Most people have never heard of Usher Syndrome, but 2 in every 20 true Acadians walk around with the French/Acadian gene of Usher Syndrome, just like my husband and me.
We have started a federally recognized 501(c)3 non-profit, Ush One See, Inc., breaking the silence to see the future. Not only for our son, but for multitudes of other Acadians who were born with this condition. And they’re out there. They’re in our schools and our churches, in our local grocery stores and the neighborhood gyms. Through Ush One See, we pledge the highest level of fiscal integrity. With funds raised, we’ll cover event expenses and then put every last cent towards research for a cure of the vision loss aspect of Usher Syndrome.
On World Usher Syndrome Awareness Day, September 17, 2016, our first event, Fight for Sight 5K/10K, will be held at the River Ranch Town Square. We will run in honor of Hunter and every other individual diagnosed with Usher Syndrome. We will fight to finish strong, as we have done for the past 5 years, accepting nothing less. I want Hunter to know that we are not going down without a fight, for his sight and the sight of everyone affected by this dreadful disease.
We know the state of the economy today, and we realize there are many causes that need your support. But this is your formal invitation to join us as we rally together to create awareness in our community about a condition that affects so many of our own. There are various ways to show your support, including sponsorships, participating in the run, in-kind donations, and volunteering. And if nothing else, I hope this letter has served the purpose of educating you a little more about the leading deaf/blind disease in the world. Please share what you have learned today.
For more information on our event, see attached flyer and sponsorship information, visit our Fight for Sight 5K/10K event on Facebook, email us at firstname.lastname@example.org or call us at 337-523-0519. You may also register for the race, donate, or volunteer directly at secure.cajuntiming.com.
Can you imagine…. Being the parent of the blind man that Jesus healed? Can you imagine…. Being part of the reason we will one day be able to give sight to the visually impaired? Can you imagine… being part of a revolution? This revolution that finds a cure could lead to unimaginable discoveries in healthcare.
Can you imagine the possibilities when the people of Acadiana rally together for the sake of their own?
I’ve seen it happen. And I know it will happen again for our family, our neighbors and our friends with potential blindness in their future.
Elise Babineaux Faucheaux
Ush One See, Inc.