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Sunday, September 9, 2012

Usher Syndrome Blog Post

For those of you who are curious how my life is without Facebook, you will be shocked to know that I am surviving, haha! At one point in my life I probably didn’t think I could live without Facebook. How would I know what everyone else was doing? How would I know when my friends get engaged or have babies? I am surviving (although I know it’s only been a little over a week!). I have actually rejoined twitter. And there's a big difference…. Plus I really only follow fun celebs and the Usher Syndrome Coalition and Foundation Fighting Blindness. And I'm sure you've noticed, I am updating the blog more. Sometimes I just like getting things off my chest, and it feels good to just write.

So in the past week, I have done a few other things with my time (besides hanging with the fam :). I made a video for the Usher Syndrome awareness website to get funding from the NIH. I’ve never had to video myself before, so I may look a little awkward at times! And once Mark Dunning, the head of the Usher Coalition, saw my video, he asked if I would do a guest post on the Usher Syndrome blog. I was glad to be asked, but that’s a lot of pressure. It basically tells the story about how Usher Syndrome has been in my life since I was a child. So here is the link to their website with my post, http://ushersyndromeblog.blogspot.com/2012/09/hunters-story.html

He also inserted the video into the post that I made for the funding website. For anyone interested, that website is www.ushersyndrome.net. There are more videos from others on there as well. I appreciate the opportunity to share our story. Although we only found out 4 months ago, it’s something that will be in our lives always and forever. 

Here are a few pictures from the weekend :)



Have a great week everyone!

6 comments:

  1. Thank you for sharing this. I read your blog link and watched your video. It made me cry.

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  2. In tears after watching your video, Elise. Your family is such an inspiration and a reminder to appreciate all the good things that God gives us. My husband and I would like to donate to finding a cure for Usher Syndrome. Could you recommend a place we can donate online?
    You, Blair, and Hunter are always in my prayers.
    LIOB,
    Nell

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  3. Elise, my heart goes out to you and your family. That video is amazing and Hunter is blessed to have two dedicated parents. Brian and I think about you guys often and you truly are a role model for me.

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  4. Elise, you are a brave and commendable person for making that video. Beautifully done, and I couldn't keep a straight face. Tears in my eyes.

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  6. Our daughter also has Ushers Syndrome Type 1 with a double mutation the Doctors have no literature on. We adopted her from China when she was 2 1/2 knowing she was profoundly deaf (she also was off the charts). She was implanted with bi-lateral cochlear implants at age 3. After 3 specialist we finally found a doctor that knew exactly what she had. We had the genetics testing done and it was confirmed. She already has no night vision and no peripheral vision and is considered legally blind even though she still see's 20-60. We are in many therapies including PT, TVI-O&M & Speech (private & school). She goes to two schools. One for Oral Language for specific language because of her implants & one for Model Peers. She has gained 2+ years of language in one year and is testing in at 4 years old now. We have one more year and she will be main streamed in public school. She was 5 in July. It has been a roller coaster ride and not ever what we thought our lives would be like, but she is worth ever moments. We are paving the path in our area. but If you ever have any questions or just want to talk...please let me know.

    Try to live in the moment. The hardest part for us was letting go of the dreams we had for our daughter and letting her create her own. She is the youngest to our 4 kiddo's (3 bio 22-18-12 & 1 adopted)

    fonnetta @ gmail .com

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