Deianira to walk for MAGIC

September 17, 2004

All, it has been a while since I have posted. While I have been

checking messages, I really have not had time to respond often as

things are a little nuts with the kids in school, work, and a full

time student at Univeristy of Phoenix Online Degree program.

I spoke with Deianira about the MAGIC walk and she really wants to

do this, so I put together a flyer with her picture and some info

about RSS, MAGIC, the convention, and Deianira. Her slogan is " I

will not let my smallness get in the way of being big " and she had

me print on the flyer that she will " walk as far as her little legs

will carry her " . WOW! What strength these kids have!

We will be walking as far as possible across our hometown (with

interesting stops of course) on Oct. 16th with a rain date of the

following Saturday.

The amazing part so far is this: within 3 hours of circulating the

flyer, we had donations of almost $300 and more promises coming in.

One gentlemen has named Deianira as his hero and will be wearing her

picture with her flyer on his jersey as he runs a marathon in San

Fransico in the upcoming month. He is trying to get other runners to

also wear her picture, and wants to have the run dedicated to her.

We will be contacting the local newspaper and radio stations to tell

them of what we are going in hopes of gaining more donations and

pledges. We are going to tell them that we would like to raise at

least $10,000-$20,000 for MAGIC. Aggressive, but dreamers make

dreams come true! We are hoping to get some local businesses

involved as well.

Deianira is doing great and in two months has gained almost 11

pounds! She even grew 1.5 cm thanks to Dr. Harbison's

recommendations and we had to even buy a larger size in pants for

the first time in over a year! She is doing great in school so far

and I went into her class to discuss RSS. It was wonderful and since

then, she has many invites for activities with friends. She even

learned how to take out her own G-Tube, wash it, and put it back in!

Many thanks to all that are on here for all of your support and

especially to Jodi and who let us register one week before

the convention, spent time explaining things to us, and are still

there rooting for Deianira! You ALL are wonderful!

Sincerely,

Danita

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