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Looking for support and ways to bring awareness. (Read 1822 times)
bigsis0787
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Looking for support and ways to bring awareness.
Apr 13th, 2012 at 10:00pm
 
I am a proud big sister of an amazing 10 yr old boy. He was born early and was diagnosed with downsyndrome. In Nov. 2011 he had a stroke. futher investiagtion lead to the diagnoses of Moyamoya Syndrome. He has had about 4 small strokes since and under went surgery for the right side of his brain in Jan 2012. He will need to have surgery for the left side by Jan 2013. We were told that Moyamoya is rare but we actually discovered that there was a girl that goes to school with him who also has it. we dont live anywhere big and fancy just a small town in Arkansas. There is not much information on this. I also worked with special needs children for a while. I would like to know what kind of support there is for me and my family and how I could help to bring awarness to Moyamoya Syndrome. thanks for all your help.
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DJ
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Wichita, KS
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Re: Looking for support and ways to bring awareness.
Reply #1 - Apr 16th, 2012 at 9:08pm
 
Hi bigsis,

I'm sorry you had to find us but I'm certainly glad we could be here for you!  Sorry to hear about your brother but it sounds like he's getting some treatment.  I'm kind of surprised they are waiting so long to do the surgery on the 2nd side but he's a big guy for getting through!

This message board and our Facebook page is generally where family members come and ask questions.  Just knowing there are others that have been in the same shoes is sometimes a huge help.

Several of us have contacted our local newspaper and news stations and let them know about moyamoya.  Youngsters have even tried other things... like lemonade stands... to raise awareness.  The possibilities are pretty much endless and pretty much up to you and what you're up for.

Please keep us informed on how your little brother is doing and let us know if you have any questions, we'd be glad to share.

Take care!

DJ

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Adversity does not build character... it reveals it... I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!
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mg12061
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Albany, USA, usa, 492, 84, NY, New_York
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Re: Looking for support and ways to bring awareness.
Reply #2 - Apr 17th, 2012 at 9:32am
 
So sorry to ehar aobut your brother. Your a wonderful big sister to be so concerned and willing to go out and bring awareness to this disease. It's very important to make otheres aware of this disease since it's not always diagnosed in time. So for that I thank you. My daughter has Down syndrome also and has Moyamoya. She was diagnosed at 5 and is now 15. Unfortunatly she had several strokes and severe enough to leave her with even more dissabilities. One way you can bring awareness is to check out the online store here on this site. There are T-shirts and bracelets. Bracelets can be handed out or sold. I've given out some bracelets and they will usually start up a conversation about the disease. Thanks again and many prayers for your family as they continue through this journey. Keep us posted!
Mary Grace
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