Charlie's Site

Charlie and his big sister, Lily, would like to say
,
Thank you for visiting us!!!





I hope this helps to keep you up to date on all that's going on in my families life since I was diagnosed with Spinal Muscular Atrophy last May. Please sign my guest book and come back often. Love, Charlie








Am I cute, or what?? I'm a big boy now!





I LOVE my sister Lily!!




Lily loves !!





We love our mommy almost as much as she loves us!





Our daddy is the best guy we know!







We've all witnessed what a single $1 can do if people are willing take a few minutes and mail it. Just think of all of the yellow bracelets that you see around - I hear Lance Armstrong raised more than a million for cancer research. I'm going to try to do the same :0) Ok -- maybe not a million, but heck what about $1,000 or $5,000 or even $10,000. I'm asking you to give a $1 -- not for a yellow bracelet or any bracelet at all but just for the knowledge that you will be helping families and kids living with SMA -- helping them get the proper equipment, medicine or other support that insurance may deny. Or maybe it will just be used to send the kids something to brighten up their day or even to help pay for some of the growing piles of medical bills. Or God Forbid, help the parents pay for the funeral expenses of the child they lost to this disease.

If you feel like you can spare your dollar -- here is what I am asking you to do:

1. Get your $1 (more if compelled)
2. Write SMA Hero Charlie somewhere on that dollar (or any other person who is living or has lived with SMA)
3. Put it in an envelope and send it to
SMA Support Inc.
PO Box 6301
Kokomo, IN 46904-6301 and last but not least

4. Forward this email on to all of you family and friend.

Where is your money going?

SMA Support is an all-volunteer, non-profit, 501(c)(3) tax-exempt organization dedicated to providing information and support to family, friends, individuals and caregivers on all aspects regarding the devastating genetic disease called Spinal Muscular Atrophy. You can learn more about SMA Support and SMA by going to www.smasupport.com

Thanks and God Bless!

Kim Sykora



Want to visit my friends?


Click here!



Do you want to see MORE of me?


Click here!



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This digital quilt was made especially for me by the Quilt of Love people! I think they did a great job! Check it out!
Charlie's Quilt of Love

When I was little, I got a blanket from an organization called B4SMA. Now that I am a big boy, my mommy makes blankets for B4SMA so other kids with SMA can get blankets! If you want to check it out and see all the other kids who have gotten blankets or learn how YOU can help click on the button below!





You're listening to: "We're All in This Together" by the High School Musical Cast

Journal

Sunday, May 4, 2008 2:52 PM CDT

Just a quick update. Lily had her piano recital last week and did a wonderful job! We were so proud of her. She also had her school music program. We left Emma home with a sitter and the rest of us enjoyed the wonderful show. Lily did such a great job and we loved hearing her friends sing songs from musicals like Sound of Music, Wizard of Oz and Mary Poppins.

John and I went to one of my best friends weddings last weekend. I was a bridesmaid. The wedding went off without a hitch and was so beautiful. We took Emma to the reception because she’s been giving sitters a hard time – not wanting to take bottles and such. She’s finally getting better.

Our Abby took Charlie to school on Thursday. It makes it that much harder that she is leaving. There isn’t another person other than John whom I would trust to take him to school if I am not there. Abby leaves next weekend to move to Irving, TX to join her fiance and get ready to start her new job. She will come back for her graduation on Saturday, May 19. We are all very sad that she is going to be gone . . . She took Charlie and Lily to see a movie on Thursday night. Again, another BIG thing :0) They had a great time.

Lily had two soccer games this weekend and even scored a goal yesterday. She is really becoming a great playing. Hopefully, we can all go see her tonight. Today she is with Daddy all day at a school function (lunch and a play) so Charlie, Emma and I are just hanging out. Charlie loves to play on his computer so he’s been entertaining himself. I’m surprised he hasn’t begged me to play Wii. It’s a daily ritual to play Wii and both older kids love it.

I hear Emma is up from her nap -- so just a short update. Check out new photos on his www.our-sma-angels.com/charlie site under photos under Charlie Age Four!

God bless everyone.

Hospital Information:

University of Wisconsin Children's Hospital
1675 Highland Avenue
Madison, WI 53792
(608) 890-8000

Links:

E-mail Author: charlies-mom@our-sma-angels.com

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