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Wednesday, February 17, 2010

The road to a cure... why not?

You know, I feel compelled to write about this topic. It is on my mind a lot, and maybe I will be able to figure it out a little bit more if I put my words to blog and see what happens. I have read some articles, been a part of discussions, and read emails from some people who are visually impaired who have a different opinion about gene therapy. These opinions, as much as I respect them, are the furthest from what I feel. Some opinions out there, aren't really supporting gene replacement therapy or finding a cure for blindness.

I can understand that. It's taken me a while to understand. If this was 12 months ago, I would have thrown up my hands and say "What?!?"... "Not interested in a cure?" But today, I get it. I absolutely cannot speak from personal experience of being visually impaired, since I am a sighted individual. I can, however, speak from someone who has first hand experience at raising a blind child. I feel there is a distinct different 'feel' in this arena between parents of blind children and adults who are blind.
*Disclaimer - I am not speaking on everyone's behalf, just what I have personally seen myself

Some people wonder why I (along with other parents) want to pursue a cure. Why would we want to put our child through any more medical appointments/procedures or unnecessary painful interventions than there already needs to be? My argument to that, is we haven't! Yes, the ERG, which was done under general anesthesia, and was a procedure that needed to be done so we can see what is going on in the eye. But that would be done with us wanting a cure or not? My son's blood work is the only other thing that we have done to try to get some other answers from the geneticist at Carver Lab.

We, as his parents accept his condition. If you are around us for 5 minutes, you will see that. We don't change our language around him, we aren't afraid to talk about it, and share his story. I don't shy people away when I get the question, "How did you know he needed glasses?" 20 times a day. We have over 30 braille books in our collection, we are actively exposing him even now to Braille. We have taken ownership of his blindness, and I feel that radiates to our friends and family. The LCA condition is another genetic makeup that makes Gavin, Gavin. The same as the genetic makeup that makes you have blue eyes, or blonde hair or to be 6' 5'' tall.

HOWEVER, with all that goodness all said.... I will go to my grave with the pursuit of a cure/treatment for blindness and have played my part. And I will feel pretty darn good about it. Finding a cure for blindness, does not mean that I do not accept my son or other blind individuals? I am not defying fate here. Most of us pursue interventions to make our lives easier and better, ie prescription glasses, hearing aids and as far as chemo treatment for cancer patients. We all want the best, fulfilled life possible. I am not stating that my son cannot have that being blind. I am saying, from a parent, I will do all that I have in me to challenge LCA and what it has done to his vision.

If this is never in God's will for him to have gene replacement therapy, then it isn't. If he is old enough to make that decision, and feels that he does not want/need treatment, then so be it. But as long as I am in the driver seat, I will pursue all avenues of options for him.

And I don't think that is a bad choice.


  1. I couldn't agree with you more! Great post!

  2. As a parent to a not blind but visually impaired child, I get what your saying. People are cruel, we live in a cruel world. We just want to make this wonderful journey called life as easy and painless as we possibly can for our children as would any other parent out there. Our children have one more obstacle to overcome that is beyond their control, so sue us if we want to figure a way around it!

    I love that you talk so openly about this on your blog...I wish I could on mine but unfortunately, I have encountered some horrible people who have already been name calling my baby and wishing bad things on disabled children, so I wish not to give these "adults" any more amo.


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