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Post by mg12061 on Jan 21, 2009 11:02:18 GMT -5
I don't post a lot here but I do visit and read everyday.To give you just a bit of background,I have an 11 yr old daughter with DS.At four yrs old she suffered several strokes,they were caused by a very rare disease called Moyamoya. Even though she had 2 neurosurgeries to treat it she will be at a high risk for strokes for the rest of her life.One thing this has enlightened me about is the fact that children DO have strokes as do infants and unborn babies.Thousands every year.It also showed me that even the medical community is slow at diagnosing strokes in children even if they present with all the symptoms,this prolongs getting them the care they need,and even allows them to have further strokes that get more severe.My daughter was like an infant at 4 yrs old after her last stroke.Her life is full of hard work,she needs help with most everything she does from tieing her shoes, brushing her hair, opening a yogart cup,dressing,etc...Imagine trying to do all of this with just one hand.The greatest thing is she's determined and I believe in time she WILL be independant because SHE will accept nothing less.She's my HERO!!! Now to get to how you can help.....I'm asking that you follow this link and read....and hopefully will feel compelled to sign this petition to put into affect a childhood Stroke Awareness Day.I am pssionate about spreading the word that kids DO have strokes. It only takes a couple of minutes,and could help us to get this passed for next year.There is no research or funding devoted to childhood stroke.So please if you would tak a minute for Kathleen and other chidlren who struggle everyday with the dissability caused by a stroke sign this petition.Thank you in advance from my little HERO!!!! www.ipetitions.com/petition/NationalCSAD/Mary Grace |
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Post by sd112170 on Jan 21, 2009 16:20:21 GMT -5
Hugs to you from GA!!!
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Post by Googsmom aka Jennifer on Jan 21, 2009 18:08:46 GMT -5
{{{{HUGS}}}}} and a signature  |
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Post by Ashlea on Jan 21, 2009 20:01:11 GMT -5
Signed!!!
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Post by CC on Jan 21, 2009 20:35:23 GMT -5
Signed from me here in New Jersey  |
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Post by Jessie on Jan 22, 2009 8:07:49 GMT -5
I was just reading about childhood strokes while I was in the hospital with dad. It made me sick to my stomach to think of kids going through that.
Petition signed!
WTG Kathleen for being a fighter!
Jessie
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Post by laurasnowbird on Jan 22, 2009 9:16:01 GMT -5
Done!
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Post by sd112170 on Jan 22, 2009 15:09:38 GMT -5
Signed!! Also sent it to others to sign to. ;D
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Post by mg12061 on Jan 23, 2009 10:10:38 GMT -5
WOW Thank you so much for signing!!!! We're at over 300 signatures! If you havne't yet checked this out please take a minute and help us spread the word.
Mary Grace
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Post by char on Jan 25, 2009 18:16:50 GMT -5
Signed from Tucson!
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Post by sueb on Jan 26, 2009 13:33:53 GMT -5
Hi Mary Grace: signed from London, Ontario, Canada.
All the best to you and Kathleen.
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Post by mg12061 on Feb 2, 2009 9:36:26 GMT -5
I'm so grateful for all the signatures on this petition.Thank you also for the well wishes for Kathleen and I.We are nearing 400 signatures!!! So I thought I'de post again to bring this thread back to the top in case someone missed it or didn't have time to sign it yet.Thank you again... You all know how important awarness is. One fact I forgot to mention was that children with DS are in one of the higher risk groups for Moyamoya which is the disease that caused Kathleens strokes.
Mary Grace, mom to a hero and stroke survivor
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Post by danikins on Feb 2, 2009 19:27:03 GMT -5
Thanks for refreshing this post. I read it and meant to go back and sign.
Signed from midwest and hugs to your precious daughter.
Kim and Dani
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Post by cmedrano99 on Feb 6, 2009 10:39:35 GMT -5
Someone told me to come here and read this! There is question my son may have MoyaMoya and we are waiting for a MRA now. He very delayed but he able to do somethings! Love to talk to you if you dont mind!
email me at cmedrano99@yahoo.com or contact me on yahoo at cmedrano99
Thanks... heading to sign now
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Post by mg12061 on Feb 6, 2009 12:07:22 GMT -5
First thanks for signing the petition! I just sent you an e-mail.Feel free to ask anything you want.
Mary Grace
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