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family camps for mm families (Read 2106 times)
twinsmom
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16 year old twins with
MM

Posts: 128
hollis, USA, NH, New_Hampshire
Gender: female
family camps for mm families
Mar 17th, 2005 at 11:21am
 
Hi.  I have 9 year old twins who've both had surgery for MM within the last year. I've been looking for summer opportunities for them, and am not ready to send them to a camp without me.   I've seen all kinds of "family camps" - week long getaways for families of kids with diagnoses like diabetes, cancer, etc., but nothing related to Moya Moya.  Does anyone know of anything out there?
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"Come to the edge."   "We can't.  We're afraid."   "Come to the edge."  "We can't.  We will fall!"  "Come to the edge."  And they came.  And he pushed them.   And they flew.   by Guillaume Apollinaire
 
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CarasMOM
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My 11 year old Cara has
MM.

Posts: 525
Sedalia, Missouri
Gender: female
Re: family camps for mm families
Reply #1 - Mar 17th, 2005 at 2:19pm
 
boy that is a toughie...I experienced the same thing...with Cara going to summer camp the last two summers especially last summer right before her surgeries...and we live in Arizona...so it was HOT.  But I stick to ones where all the activies were inside in a/c and that they were aware of her condition.  I remember seeing something for stroke victims but she didn't really look like she was affected by a stroke yet.  So a tough spot but at the same thing constantly wondering if she was in the right environment, too.  And I'm trying to figure out what to do this summer, too...now that she had her two surgeries but still has one or two TIA's daily (skips a day or two every so often).  I think MM is still too rare and unknown to have a camp for it yet.  I'll look around and keep you posted though.

Hugs,  CarasMOM
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Warm Hugs and Prayers, CarasMOM (Carol)
 
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twinsmom
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16 year old twins with
MM

Posts: 128
hollis, USA, NH, New_Hampshire
Gender: female
Re: family camps for mm families
Reply #2 - Mar 18th, 2005 at 1:17pm
 
Thanks, Caras mom!!  Even something not specifically for MM, but maybe brain injury or brain surgery related.  It would be nice for my kids to meet some real live kids who've had even some of the same experiences they've had!!  We live in a very small town, so needless to say, we're the only ones here who've experienced anything like this!!  Thanks for the help!
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"Come to the edge."   "We can't.  We're afraid."   "Come to the edge."  "We can't.  We will fall!"  "Come to the edge."  And they came.  And he pushed them.   And they flew.   by Guillaume Apollinaire
 
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CarasMOM
Old-Time Poster
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My 11 year old Cara has
MM.

Posts: 525
Sedalia, Missouri
Gender: female
Re: family camps for mm families
Reply #3 - Mar 18th, 2005 at 7:56pm
 
Haven't looked yet....but just wanted to let you know I have a set of twins too.  15 year old boys plus a 17 year old boy...Cara loves her BIG brothers.  If you look on the MoyaMoya Family page of pictures...you will find a picture of my family...all four kids were adopted as babies but Cara (from Guatemala) looks just like 17 year old Brandon (Italian and Mexican)..the twins are blondes.  Smiley  I'll be researching for some camp ideas the next couple days and will post or PM you....hugs, CarasMOM
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Warm Hugs and Prayers, CarasMOM (Carol)
 
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