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Madison’s Story

Welcome to my CaringBridge site. I have Spinal Muscular Atrophy (SMA) type 1. I created this to keep my friends and family updated about me. My Story is a little introduction about me. Be sure to read my journal, view my pictures, and MAKE SURE YOU WRITE ME A NOTE IN MY GUESTBOOK!
I'd like to know that you were here and it would make me SMILE! HUGS!




Hi! My name is Madison Rose Reed. I was born on February 4th, 1997. I am 14 years old now. I have Spinal Muscular Atrophy (SMA) type 1. I could have died at 2 years old but I didn't. My parents gave me a chance to live and didn't listen to most of the doctors. I have a feeding tube because I can't swallow. I use a bipap machine at night and sometimes all the time when I'm sick. My muscles don't work right- they are weak and floppy. My brain is normal though.  I'm just like other kids.

I like to sing. 
I LOVE the band & Nick show Big Time Rush! I also like the band New Hollow. Some of my other favorite singers are Hilary Duff, Miley Cyrus, Demi Lovato, Selena Gomez, Raven and Ally and AJ.   

I like to do the computer especially virtual worlds like VFK (Virtual Family Kingdom), MVK (My Virtual Kingdom) & SmallWorlds. My favorite & the BEST virtual world is VMK or Virtual Magic Kingdom! Disney closed VMK down and I want it back! There is NO other game like it! I do alot of Nancy Drew computer games too.

I like to watch BIG TIME RUSH, American Idol, America's Next Top Model, Dancing With The Stars, Top Chef, and lots of other shows on BRAVO, DISNEY, HGTV, and Nickelodeon.

I will write about all of this stuff here on my own blog. I decided to create my own blog now so you can see that I'm just like other kids.I have the same thoughts and feelings but I just can't move and do the same things other kids can do.   You can visit my other web site too at
www.miracleformadison.org

 

Latest Journal Update

I'm 17 now!

Hi!

I JUST TURNED 17 YEARS OLD LAST WEEK!!!!!!!!!!!!!!!!
Despite not getting to go to Disney On Ice because of all the snow, ice and freezing temperatures, I still had a wonderful birthday week!. The theme for my birthday was FROZEN! Isn't that perfect? LOL! My Uncle Anthony decorated my house and it looks so cool! I had 2 real parties with my family and a few virtual parties too! Here is a link to my 17th birthday pictures: Pictures: https://www.facebook.com/princessmadison.reed/media_set?set=a.800858589928490.1073741846.100000130692112&type=1
HAPPY BIRTHDAY TO ME!!!!

Last year I turned SWEET 16! I celebrated all year! Here are some highlights of last year:
1. Sweet 16 birthday party at home with family 2-4-13
2. Walt Disney World trip 2-20 to 2-28 2013! Aunt Michelle ran in the Disney Princess half marathon for the 2nd time. Aunt Fran came with us. We celebrated riding the Little Mermaid ride over and over again and eating at Be Our Guest Restaurant and Cinderella's Royal Table! It was a fun trip!
3. I went to 3 Big Time Rush concerts this past summer and got to meet with my boys each time! My friend Emma went to 2 of the concerts with me! We had so much fun! This was the BEST summer of my life! I've seen BTR in concert 8 times now and went to 8 meet and greets! 
4. We helped with an SMA Family Gathering here in August during SMA awareness month. I got to see a lot of other SMA families. We had fun shopping, going to the zoo and there was an awesome talent show at the picnic and candle lighting.
5. I took another trip to Walt Disney World to celebrate my birthday with Uncle Anthony and my Godfather Ed 9-21 to 10-3! I went to 4 Mickey's Not So Scary Halloween Parties! We ate lunch at Be Our Guest and had dinner again at Cinderella's Royal Table. ( a few other places too) I got to meet a lot more characters! It was another magical trip!
7. Do you remember my favorite virtual world VMK closed 5 years ago? Well it's open again! Not run by Disney though. Just a fan. It's called MyVMK now. Not sure how long it will last but it's been fun to be back in the kingdom again. My friend Littlebelle had one of my virtual 17th birthday parties in a room she created for me! Oh and Littlebelle gifted me a Castle suite guest room when she won Best Guest room. Little princessmadiro is home again! I got to go to my first ever Club 33 party too! Thank you Ruth!
6. I was selected as one of the NCH Columbus Marathon Patient Champions. I represented the last miracle mile- mile 26 on October 20th, 2013. Our theme was Run Wild...Never Look Back! Aunt Michelle ran the 1/2 marathon and I got to run/roll the last part of it with her to the finish line! We raised almost $5000 for SMA research at NCH! I cut my hair and donated it to Wigs For kids for the 3rd time and my mom shaved her head!
7. 12-14-13 I went to my first Heffron Drive concert! (yes in the winter) I could NOT miss this! Heffron Drive is Kendall Schmidt's band that he started before he got the role on Big Time Rush. I got to meet with Kendall and Dustin after the show! It was AWESOME! 

A random Rusher (who I didn't even know) made this video for me for my 17th birthday. She is also in a wheelchair and was touched by how nice the Big Time Rush boys are to me. This video sums up my whole experience with Big Time Rush perfectly!
https://www.youtube.com/watch?v=WBEgTMM9Upg

Well that's what I've been doing! I think I had an AWESOME year! What have you been doing?

Love,
Madison
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Comments

1 Comment

nicole walden
By nicole walden
What a cool video!!!!! Must be nice to be a celebrity, huh?