Brooke's Journey

Brooke's China segment aired

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This entry was posted on 9/1/2007 12:07 AM and is filed under uncategorized.

Well, we have finally been able to view the China segment!  We are blessed with wonderful family, friends, and a caring community; all who rallied together to make this all possible for Brooke.  Ed and I had said in the beginning, if we can help one family get correctly diagnosed, it is worth putting ourselves and Brooke out there in an effort to help someone else.  We may have accomplished our mission.  A family from Alabama phoned me the same night the piece aired.   Her daughter, undiagnosed with developmental delays is so similar to Brooke, down to some very specific details regarding movement, speech, personality, cognition, looks.  After speaking with the Mama, I am quite certain her girl also has glut-1 and she has begun the process to get the diagnosis.  Our prayers are with them as they find their answers, just as we and many families before us have had to.  Happy Holiday weekend to everyone!
 

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    • 9/1/2007 7:49 AM Kelsey wrote:
      Wow unbelievable!! That is wonderful news!! Just being able to reach out to millions of people with a TV interview could make miracle answers for a lot of families trying to know the diagnose of their child...thanks to all your hard work & research over the years you have helped not only Brooke but possibly many more families....Congrats to you...that is just wonderful! Kelsey
      Reply to this
    • 9/1/2007 9:10 AM chester wrote:
      HELLO FROM KILWORTH ONTARIO CANADA
      Reply to this
    • 9/14/2007 9:34 AM Renee wrote:
      I just started following your blog after my sister-in-law saw the segment on the news. My 4 1/2 yr old exhibits many of the same characteristics of your daughter and too has been diagnosed w/CP for lack of a better diagnosis. My question is, how did you get started in China, and what type of cost is associated with such treatments? We will continue to follow your daughter's progress and wish you all the best of luck!! Renee
      Reply to this
    • 9/19/2007 12:15 AM Dick & Phyllis Petarius wrote:
      Just doing my usual midnight research. We think of you all a lot. What great news that Brooke is doing so well. We will continue to pray for further progress for Brooke. Dick misses Ed and LDV so may just drop in sometime. God bless you all. Dick and Phyllis
      Reply to this
    • 10/4/2007 10:50 AM Kay Lassila wrote:
      Vicki, Could you maybe update us on how Brooke is doing? Are you seeing improvement, is the treatment worth doing, any negatives?

      Best thoughts and thank you.
      Kay
      Reply to this
    • 10/10/2007 7:42 PM Aunt Cindy wrote:
      Keep up the good work, Toots! You are my motivation! I love you!
      God Bless You!
      Your God Mother
      Reply to this
    • 7/3/2008 9:40 PM felicia wrote:
      My daughter Samantha has just been diagnosed at 12.5 years old with glut 1 syndrome.
      We have started the MCT ketogenic diet to help her....can we speak via e-mail???i would love to e-mail you....thanks so much
      fFelicia spiegelman
      Reply to this
      1. 8/10/2008 11:17 AM Vicki wrote:
        Hi Felicia: Sorry I didn't respond to you sooner, I just realized you had contacted us! Yes, you can email me at vbarels@aol.com any time about Samantha and the dx and diet. Brooke was diagnosed at age 6, and she was just 11 on Aug.3rd. Hope things are improving for Samantha on the diet. I know it can be tough!
        Best wishes to your family,
        Vicki Barels
        Reply to this
        1. 9/21/2008 10:44 PM felicia wrote:
          hi will you be going baaaaaack to china any time soon???have you notice more imporvements???thanks
          f
          Reply to this
          1. 10/9/2008 8:51 AM Vicki wrote:
            Hi Felicia: We have considered a return trip to China. We haven't made any concrete plans. It's a difficult decision, we know it helped Brooke with her ability to walk using her canes, and even taking some independent steps, but we need to weigh out all of our options and make sure a return trip to China would be our best choice for Brooke. The improvements we've seen have remained, her repeating words without several models has improved, and continues to improve. I would say her physical improvements have plateaued. You can email me off website anytime.
            Vicki
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