Anyone want to join my Down Syndrome Walk Team?

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lyknscribe
lyknscribe Posts: 89
in Chit-Chat
My nephew was born with Down Synrome in 2009. He passed away in 2010. We first walked in the Down Syndrome Walk in his honor, and now we will walk it in his memory. I'm not big on supporting assoications, I always wonder where the money goes. The DSA approched my sister while she was still prego once she found out. They helped her find classes and came to her home for his therepy. They were there during his heart surgry and only ever a phone call away. He was in the hospital for a month before he passed and there was not a day she didn't have a memeber of the association sitting with her. Afterwards they even planned his memorial service for her since she was beyond that ability then. They even helped her get involved with Kindermourn, a group for mothers and fathers who have lost children. We have spirit walkers too , who can donate or just say they are walking in their home town and walk in "spirit" with the rest of the team.

Just thought I'd throw it out there, it's a great cause with a great exercise too.

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  • CoachMaritova
    CoachMaritova Posts: 409 Member
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    Where is the walk and how do we get involved?
  • shagybear33
    shagybear33 Posts: 272
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    I would love to walk in "spirit"!

    Sounds like a wonderful organization. Do you have a date/time?

    I'm so sorry for your sister's loss. hugs
  • Brandysmith1985
    Brandysmith1985 Posts: 17 Member
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    where is the walk? what state? I may be interested in that, I am in California. I have a cousin with down syndrome and would love to support it. Let me know :)
  • Contrarian
    Contrarian Posts: 8,138 Member
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    Please provide more information. I'm sure lots of people would like to be involved in this.
  • 39army
    39army Posts: 1 Member
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    Yes, please let us know when and where, I can for sure make it in Spirit! I had a cousin with DS, she was the cutest thing in the world, had so many funny/cute saying! Her birthday is the same as my daughters! She was smart as a whip too! I would love to do a walk!
  • Suziq2you
    Suziq2you Posts: 396 Member
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    Please accept my condolences. I have an eight year old son with Down syndrome. He is my awesome joy. We will be walking in the Tulsa, Oklahoma walk in October. Please send me your walk info!
  • lyknscribe
    lyknscribe Posts: 89
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    Wow thanks for the amazing responce!
    http://dsac.kintera.org/faf/search/searchTeamPart.asp?ievent=468115&lis=1&kntae468115=EC4362F2D3644D53AD627C02A0748FDF&supId=0&team=4276523&cj=Y

    is the main page and here is mine:
    http://dsac.kintera.org/faf/donorReg/donorPledge.asp?ievent=468115&lis=1&kntae468115=EC4362F2D3644D53AD627C02A0748FDF&supId=266064475

    The buddy walk is October 1st in freedom Park in Charlotte NC.
  • lyknscribe
    lyknscribe Posts: 89
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    If you decide to donate - which you aren't obligated to do so, just spreading the word is a great help - but if you do donate more than 10.00 they will mail you your shirt even if you can't walk with us there.
  • lyknscribe
    lyknscribe Posts: 89
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    Thank you for the condolances. He was the most precious thing in all the world. He was 1 month and a day older than my son. He was doing amazing until he was 4 months old when he developed infantile spasms. There are only 2 RXs for that because it was so rare. The first one made his white count drop and he got pnuemonia (a month after he had his heart surgery to close a hole in his heart) They changed him to the 2nd rx and that fixed a second hole in his heart. What they didn't know he the hole had acted like a vent and he had an undiagonised hyper(tension i think(?)) in his heart, this put his heart into over load...they put him in a coma, but...he never came out of it. He died at 8 months old.
  • Lolyballs
    Lolyballs Posts: 180 Member
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    This sounds like a great organization and your walk in on my birthday so that was a sure sign that I was supposed to do something... donation sent! I will pass the word on to family and friends.
  • lyknscribe
    lyknscribe Posts: 89
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    This sounds like a great organization and your walk in on my birthday so that was a sure sign that I was supposed to do something... donation sent! I will pass the word on to family and friends.

    OH WOW! Thank you so much! I'm so greatful for any sort of support! You have really made my day! Oh annnd HAPPY EARLY BIRTHDAY!
  • lyknscribe
    lyknscribe Posts: 89
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    bump ^.^
  • shagybear33
    shagybear33 Posts: 272
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    donation sent :D
  • lyknscribe
    lyknscribe Posts: 89
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    Oh shaggy you are amazing!!!!! You truly made my night!!! -Big Interwebz hugs!- Thank you!
  • lyknscribe
    lyknscribe Posts: 89
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    Bumpy Bump!
  • lyknscribe
    lyknscribe Posts: 89
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    U.P.-D.A.T.E!!!!!

    The walk is only a few days away now so if you want to join our team or be a spirit walker, or even donate time is running out. Follow the link in the original post to help out with this amazing cause in the memory of the speical little boy!
  • lyknscribe
    lyknscribe Posts: 89
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    **pokey**
    btw, to put a face with a name - this little angel is Evin Andrew, he would have been three this feb.
    26965_1369389720567_1406446932_31030215_1088767_n.jpg

    We are walking in his memory.

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