In today's "True Life: I'm Losing My Sight," we met some young people struggling with deteriorating vision. So how have they been doing since the show taped? Check out our Q&A updates below.
BLANCA
What are you up to now?
Everything is going well over here in Ohio. Ray and I are pregnant again with our second boy, due Dec. 6. Ray Jr. is growing up so fast--he's walking and talking and getting into EVERYTHING! I guess that’s the joys of having a little boy. But I love being a mommy and Ray is the world's best dad ever!
Have you continued studying Braille?
I haven't gone back to the sight center for further Braille lessons since the show. I have high hopes for my vision and feel that learning Braille is like building my own coffin. Since the show, my vision has gotten a tad bit worse. They discovered that I have multiple significant blind spots, but I just work through it with my "shank." Nothing I can't handle.
How is your son’s vision?
When our son was first born we went to a couple of doctors to get him tested. They referred us to genealogists who specialize in hereditary diseases, but after a couple of appointments, we decided not to go through with the testing. Our theory is that if he has it we will eventually find out when he's older, but we didn't want to torture his baby eyes and veins with tests. As far as his normal pediatrician checkups go, the doctor doesn't see any sight problems thus far.
What was it like sharing your story with us?
Sharing my story was actually very difficult. Growing up with this disease it never seemed like a big deal to me. I had it, and there was nothing I could do to change it, so I just learned to deal with it. After having "True Life" follow me and point out different things, I started to realize what a big deal it truly was. I also learned a lot about myself that I didn't realize during the shooting. I never felt upset or sad about my disease before, but after seeing all the different things that affected me I realized that deep down I was holding a lot of emotions inside.
JEREMY
What are you up to now? Have you continued to raise money for LHON research?
I play a lot of golf and shocked the field of 60 competitors from 14 countries by winning the World Blind Golf Championships in England in August 2010 with a dramatic chip-in in a playoff. I've continued to raise money for LHON research. Achieving $35,000 through SDSU's Greek Week, $50,000 through C.U.R.E. [Cycling Under Reduced Eyesight] Rides, now over $100,000 to date with a new goal of $1 million. I'm a motivational speaker, working with organizations that want to learn how to overcome life's most dramatic obstacles and be inspired to live strong, confident lives.
How are your brother and sister doing? Have they developed symptoms for LHON?
Eric just turned 16 and is getting his driver's license, while Julie is 19 and is studying abroad in France for a year. Neither has developed symptoms for LHON, and both regularly visit the Doheny Eye Institute to check the health of their optic nerves. My mom is developing communication among the LHON community through www.LHON.org and Facebook LHON groups. She does this to ensure that other LHON families are aware of the latest research so that they know what environmental factors reduce their risk of vision loss, and what treatment options are under development.
What was it like sharing your story with us?
It was tough, because during filming I was still adjusting to living life legally blind. Over time things have become easier, and I've had lots of great things happen that can be seen on my website. Hopefully people who watch the show will realize that by maintaining a positive attitude during a challenging time, they too can influence how their lives evolve.
AUSTIN
What are you up to now? Have you kept in touch with your friends from the school for the blind?
I spend most of my time going to the gym, or I hunt deer and elk during hunting season. Outside of that I spend time with my loving girlfriend Rebekah. I really haven't kept in close touch with anyone from the blind school. Occasionally I'll talk to or hear from one of them.
What was it like sharing your story with us?
Sharing my story with you was something I would have never dreamed of doing before, but at the same time it felt good to get my story out.
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