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Blind Insight

October 13, 2009

A father with Usher Syndrome writes about his life. You can follow his story here.

Rachel-Miss Travel Girl

October 13, 2009

Rachel, age 22, has Usher Syndrome type 1 chronicles her travels around the world. She is fluent in French and has visited and lived in France a total of six times since age 16. In addition, she's traveled to Italy, England, Peru, Greece, Australia and New Zealand. Click here to read about her experiences.

Jelly-New Jersey

October 13, 2009

Jelly describes herself in her blog: "dirty hippie living in the 'burbs, wishing i lived in france eating REAL chocolate. i love hot sauce on my eggs & the color pink. i am notoriously clumsy with a knack for stitching & baking cupcakes. i am never seen without a book or my day planner. i am overly sensitive, the wearer of hearing aids and am married to the sweetest woman in the world. i heart my little family to pieces." You can read her story here.

Sense of Family

October 13, 2009

"I am a foster parent and I have adopted two children, both with very different needs. Rebecca has Ushers Syndrome 1. Jasmine has RAD (reactive attachment disorder). We adopted the children when they were 8 & 10. My husband and I believe we were called to care for these children. While they bring tremendous joy into our lives, we also face many challenges. I use this blog to talk about both.

Andrea-Elliott's Story

October 13, 2009

"Elliott is our future rock star or tractor mechanic...he hasn't decided yet! He loves to play cars, go to the zoo and hang out with his friends at pre-school. Oh yeah...did I mention he's profoundly deaf and has Usher's Syndrome? Don't worry...he wears cochlear implants from Advanced Bionics and he can hear me whisper from across the room! At least he'll be able to hear me yell at him..."

Read about Elliott here.

Shari-Literally Blindsided

October 13, 2009

"Living with a genetic disorder called Usher Syndrome Type II. It's a gamble-each parent must have the same gene to pass it on to the child. There's a one in four chance of passing it on. One is born with varying degrees of hearing loss and loss of sight caused by a retinal disorder called retinitis pigmentosa (RP)."

Read about Shari here.

Christine-Tactile World

October 13, 2009

"I was born Christine Amanda Roschaert on January 5, 1980 (do the math) in Ottawa, Ontario – the REAL Capital of Canada to hearing parents. I was sent to the Sir James Whitney School for the Deaf in 1984 to start a lifelong education in Deaf Culture. My parents, Robert and Jillian, went on to learn sign language, as well....When I was eight years old, amidst speculation when I would bump into posts or trip over objects on the floor, I was sent to the Hotel Dieu Hospital in Kingston, Ontario for field vision and genetic testing. There, my family discovered I had Usher Syndrome Type I."

Read about Christine here.

Amanda-Cyborg Now

October 13, 2009

"I'm 21, I'm from New Zealand and have Usher Syndrome type 1. It means I'm profoundly deaf with retinitis pigmentosa (night-time blindness and diminishing peripheral vision). I have a cochlear implant and am proud of who I am.
This blog just consists of my ramblings, advice and tips for anyone out there who may be interested."

Learning to Navigate Blindness & Hearing Loss

March 18, 2010


I am a mom with two beautiful kids. Abby & Jesse are 5 & 4 yrs old. They are my joy! I have also been a research scientist, an engineer, and a teacher. I am interested in physics, space, and math. I hope to pursue my doctorate in Biophysics at the University of Denver and eventually do research that benefits Usher's Syndrome. I am excited about the possibilities and intend to face my obstacles head on. I am also a believer in Jesus. Although my life has taken me down paths I did not ask for I know that perhaps there is a plan for all of it.

To read more of Chrissy's story, click here

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