Long Island, NY

The day of the walk dawned and as we had hoped, the weather was beautiful.  As we started to set up, we began to get really excited.  I know that our main goal was to raise funds for research, but we were excited to see the participants that we had met at last years walk again and to meet those participants that we had already gotten to know thru their emails or calls about this years walk, as well as those that we hadn't met yet.  Once registration opened and everyone began to arrive, we started to see some familiar faces and many new faces.  There were many more children participating this year.  One Mom contacted me prior to the walk stating that her nine year old daughter had just been diagnosed with Chiari and while she was doing research she had come across the walk.  Mom wasn't sure if she  wanted to participate in the walk or if she even wanted to bring her daughter, because she hadn't really explained to her daughter what Chiari was yet.  She seemed to be looking for advice, so I offered that maybe Mom might like to just come herself and meet others who are going thru exactly what she is or already have. Perhaps then she might see that she is not so alone in this journey, that others have been there and crossed to the other side.  This Mom not only came to the walk and found the support that we had to offer her , but she brought her daughter who also met some of the other children who gave her a lot of support without even realizing it.  A young sister of a little boy with Chiari and many other related problems read us a letter that she wrote to the First Lady requesting funds for research, which was very heartfelt.  This is just her way of helping not only her brother, but all of us.  What a big heart for such a little girl!    We had a participant who came from Brooklyn with her sister who was five months post decompression.  She kept thanking me for my support and for organizing the walk like I had committed some big feat.  Really she is the one who commits a huge feat everyday.  She's dealing with Chiari and she has a special needs child that she takes care of every day no matter how she's feeling.  I'd say that that's  a huge feat.  I told her that she's my hero....
 
I just want to thank everyone who came and participated in the walk this year.  It was great to see those of you who came back for a second time and it was wonderful to meet to see those of you who came for the first time.  Also I can't thank you enough for all of your efforts in raising donations.  You really should be proud of yourselves.  It is thanks to that effort that we will continue to see research move forward.  Thanks again!  Until next year...  

-- Penny Tierney

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