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Tuesday, February 18, 2014 |
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| So just a quick post. Things are going very well here. Brady continues to grow and learn every single day.
He continually proves to us that he is one of the most awesome, smartest kiddos ever.
So far he remains seizure free and his EEGS remain normal. We really don't have any complaints, as our lives are more normal than they have ever been...I mean what is the definition of normal anyway,lol.
We just celebrated Internation Angelman Day on Feb 15th and had a blast. The whole week was full of FB and twitter posts about Angelman Awareness. We had nationwide Ruby Tuesday fundraisers for our research organization, (FAST)Foundation for Angelman Syndrome Therapeutic, so hopefully we raised a ton of money for more research.
As most of you know, Brady was part of a clinical trial for a potential Angelman treatment. We are still waiting on all the peer reviews to be done, so that results can be published.
I can't provide details about what we have seen, but I will say that it has been nothing but positive for Brady and we are excited. Can't thank FAST enough for all that they do for our kids. We are no longer being told to do therapy and maintain the course because there will never be a treatment. FAST has shown us that there is reason to reach for the stars and have HOPE! They have shown us that a cure is "not only likely, but eminent". I promise to share trials results when the results are released ;)
Anyway, Im tired so thats it for tonight. Keep watching our blog because I will be posting a firstgiving fundraiser link for FAST. Will post more soon!
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posted by angelwings
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10:19 PM
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