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Hello all,

The conference was great. As this was our first we did not know

what to expect, but it was even better than we could have imagined. Thanks

to all the people that made it happen, your tireless efforts are greatly

appreciated. To us the best part was meeting the other parents and seeing

the other kids with CHARGE. This was the first time we have met either.

One thing that we did not have time to do before the conference was to make

copies and hand out a poem that our daughter Mallory wrote about our CHARGER

Conor. Mallory wrote this poem last year in 8th grade as part of a school

project. It has touched our hearts, and I think it shows just how special

the bond between a CHARGER and a sibling can be. I hope you all love it as

much as we do. I have attached this file as a windows text file so that

anyone with windows can read it. Sorry about the look of it but the

formatting changed quite a bit as it was written with a different program.

Rick,

husband to Lissa the Greatest wife a man could have,

father to Conor 19 months with CHARGE,

stepfather to Mallory 14, and 7

<<CONOR POEM.txt>>

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7-28-99

rick-

the poem brought a tear to my eye.

i want to let you and your wife-and mallory-know how very impressed i was

with her at the conference. you should be very proud of her. her help

with taking care of andrew was priceless to me. and patrick is a fine

young man-i'm glad he and andrew hooked up.

although i didn't attend but one session-i ended up watching aubrie-i

feel i got an education just being in the lobby talking with people and

experiencing the chargers.

the whole experience was overwhelming-i'm so glad i went.

good luck to all of you and hope to see you all in 2001.

barb shannon-grandmother to aburie " charger " & andrew, mother to michele

and mother-in-law to dj

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