Family battles Usher Syndrome alongside daughter
With the autumn equinox approaching, we will see more dark than we will see light.
The September equinox begins on the 22nd. However, on September 15, many people will be observing Usher Syndrome Awareness Day. The equinox is a metaphor for the threat of Usher Syndrome, which is categorized as both vision loss that worsens over time and partial, or total, hearing loss.
On September 15, 2017, Louisiana Governor John Bel Edwards proclaimed it to be Usher Syndrome Awareness Day.
Katheryne, the daughter of David and Nicole Hebert, is affected by Usher Syndrome. The family lives in Iberville Parish.
"At the age of 2, Katheryne recieved her first cochlear implant. Eventually, she received bilateral implants," David said.
Katheryne's parents didn't imagine she'd experience other declining impacts within her body, though.
"In 2012, we were attending a regular eye exam appointment for Katheryne when the doctor noticed damage to the back of her retina. This is called Retinitis Pigmentosa. This eventually lead to her diagnosis of Usher Syndrome after some genetic testing," David said.
The eye disease works from the outside in. Katheryne's peripheral vision will be the first part that is affected, and it is already being affected. Eventually, her straight-line vision will be, too. There are three types of the syndrome. Katheryne has type 1.
Type 1 is a recessive genetic disease. Children that are affected by this type are usually born profoundly deaf and experience progressive vision loss over time. Symptoms are noticed, normally, before the age of 10.
"In regards to the vision loss, Katheryne has been receiving Vitamin A regimes, which we hope helps slow the progression of it. We travel to see an eye specialist in Boston every two years," David said.
There have been some gene therapy treatment trials in the works for Usher Syndrome. These trials have been showing some positive results and potential hope for those with the syndrome. David and Nicole hope that their daughter will be able to receive these treatments once she is older to prevent, at the least, anymore vision loss. Right now, Katheryne is 14 and will have to wait until she is older to be a part of the trials.
"Generally, Katheryne is a very happy girl and does what most other kids do," David said. "She has her down days, though, but doesn't let it affect her for too long."
This year, Katheryne has started to learn how to read braille, starting with the alphabet.
"We really hope that in the future we are able to slow the progression of Usher Syndrome, especially with the potential that these gene therapy treatments are showing," David said.
To find out more about Usher Syndrome, or to help Own the Equinox, visit www.usher-syndrome.org
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