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Wednesday, May 13, 2009

Gene Therapy video

Here is another video. This is a quick peek into the topic of gene therapy for LCA specific blindness. Like I mentioned before, if the doctors suspicion is correct, and Gavin DOES have LCA (Leber's Congenital Amaurosis), gene therapy will be an option for him one day. This study been in the works now for about 15 years, and the trial studies have helped blindness in I believe 8 people (the last count that was mentioned at the conference).

Even if this isn't something that can help Gavin soon, my heart goes out to the parents of these young individuals who have participated in the study. To imagine seeing their children gain sight, is a moment in my life I only can dream of right now. To know they are actually going through this, makes the hairs on my arms stand up. I commend them for their patience in the long, enduring study. I hope they are gratified by every moment given to them as their children begin to visually make out the outline of their face, and eventually, God willing, every last detail of their phsyical features. I can only imagine the feeling, and am patiently waiting for our day.



Watch CBS Videos Online

Excerpt from another participant, age 22. He had the gene replacement surgery on Jan. 31, 2008.

JUST TWO days later his response:


Following the surgery at the University of Florida, he said it took a few days of recovery before he was able to go outdoors -- but what he saw was spectacular. “I saw blue sky for the first time,’’ he said. “I was just standing in disbelief, thinking that the sky was always this blue, and I could never see it. I couldn’t believe it.’’

Since then, he has emailed Dr. Jacobson, the researcher who has been working with Turner for 14 years, to thank him and the many other scientists who have brought him to this day. “I said that every morning I wake up and look at the sun rise, and every day it goes down, and I think these things are so priceless. And they gave me that gift,’’ Turner says.

5 comments:

  1. Im getting goose bumps reading this and watching the video. Can you imagine the day when he gets this therapy (if for sure it's an option and he does have LCA) and the miracle in that?

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  2. Whoops Yeah that was me. I didn't sign my name. Its Megan, Jen. :P

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  3. Jenn

    I know when people talk about "clinical study" it sounds like so far down the road. Being the age he is, do you know how quickly this is going to approach you? When I look at his little face it hits me he will be looking back at me one day? As earth shattering as that is for me, I cant begin to imagine the feeling you and your husband get when you think about it. The Lord has blessed you with him, but what is even more miraculous than all of this is the Lord has blessed him with YOU! You are a true example of a dedicated mother who will stop at nothing. You are sharing about his condition, to bring awareness to others in the middle of the devastation of trying to come to terms with his condition. You REALLY need to continue the move with this and reach others and inspire them. You are my new hero.

    I was looking at what your team has raised, over $6,000 in a few months!!! WHAT!

    btw I'm ready for my lunch!
    xx~steph

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  4. Oh and I want to e-mail my mom that video. her work blocks blogs from the internet or whatever. Can you e-mail it to me??
    ~steph

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    ReplyDelete

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