Tuesday, April 10, 2012

April 10, 2012 (Part One)

Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers.  And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing.  If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.

My mommy & daddy told me I should start this blog by telling everyone thank you for forwarding my story and helping to spread awareness about SMA.  One of the items on my bucket list is for my story to go viral in an effort to eradicate SMA...my daddy helped me with the word eradicate and quite frankly I don't even know what it means, but it sounds serious.  I started my blog yesterday evening (4:30p) and as of right now (11:21p) there's been 19,705 total views in a total of 10 different countries.  I can't count that high, but that certainly seems like a lot of views and we seem to be well on our way to going viral, but I still need all of the help I can get, so please keep forwarding my story to everyone you know!


I also overheard my daddy tell my mommy that he was contacted today by NBC & FOX News Houston as well as 104 KRBE in Houston because they read my blog and want to help me tell my story.  I'm truly amazed at the amount of people who want to help me and who are praying for me and my mommy & daddy.

Oh and also a BIG thank you to two of my Aunt's who blogged about me today...my mommy & daddy read me your blogs and I love both of you very much!

Aunt Brooke in California -  http://lifeonfriendshiplane.blogspot.com/2012/04/meet-avery.html
Aunt Kate in Washington, D.C. -  http://mrandmrssmithgotowashington.blogspot.com/2012/04/averys-bucket-list.html


OK now for the fun stuff...check out some of the fun things I got to do today!  

I went to some place called Schlitterbahn, which is apparently German for "The hottest coolest time in Texas" because that's all my G-Pa kept saying the entire time we were there.  It was closed, but that didn't stop me, mommy, daddy, and G-Pa from having a good time inside the park while my Nana Sandi played "The Lookout" as my daddy called it.  When we got back to the car Nana said it was all clear and she never saw anything.  I would have liked to gone American Idol Randy Jackson on her and said, "Good Looking Out Nana", but since she didn't find whatever she was looking for I didn't feel it was necessary.  Anyway, here's some pics of our experience today at Schlitterbahn.

My daddy kept saying he's about to go Clark Griswold on someone...whatever that means.

Breaking the law, Breaking the law.
 


Seems friendly enough.
First I was like woah, the we were like woooooah!
Saved by the bow!
Glad my getting sea sick doesn't stop my parents from smiling.

Wee! Wee! We we weeeeeeeeeeeeeeeeeee!
Shhhhhh, me & daddy are sleeping!


I did a lot more today, like have an impromptu birthday & tea party (thank you Aunt Kaitlin), met my Uncle Jeff who was kind enough to come see me and bring me a bunny even though he and my Aunt Stephanie are delivering me a friend tomorrow...I like presents and congratulations Auncle Jeffanie, I saw my Aunt Marcy for the 2nd straight day, and I got to blow bubbles with my mommy & daddy and my Aunt's Crystal, Jamie, & Adria.  But since it's waaaaay past my bedtime, I'm going to save the pictures and details about the rest of my day today for tomorrow.













































Items I Can Scratch Off My Bucket List:
1. Break something - breaking the law, breaking the law.
2. Wrap my arms around my daddy.
3. Go to a water park.
4.Visit my Nana Sandi & G-Pa Steve in New Braunfels.
5. 
Stay up past my bedtime.




Don't forget to share my story by following & forwarding my blog, following me on Twitter  (AveryBucketList) and Like Me on Facebook (Averys Bucket List)!  While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!



If there's anything you'd like to mail me, you can send it to:

Avery's Bucket List
PO BOX #2849
Bellaire, TX 77402


Also, my mommy & daddy wanted me to make sure you know that all monetary contributions will be used towards continued SMA awareness and the further advancement of research to find a cure for SMA.  If you feel more comfortable making monetary donations directly to a registered non-profit organization, mommy & daddy strongly encourage you to please do so in my name to the following organization:

Fight SMA (www.fightsma.org)


If you donate directly to Fight SMA please let me know so I can keep track of reaching my bucket list goal of raising at least $1,000,000 towards a cure for SMA.

39 comments:

  1. This blog made me smile ms. avery... I am so glad that you got to have so much fun with your mommy and daddy today. :)

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  2. im crying through having to smile at this blog. so much inspiration here. :) but i do have something to add to your list --- have a professional photo shoot with all of your family. and i would want nothing more than to do that for you for free. www.gingersnapphotographs.com <3 i hope that i can come down and do that for you guys....

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  3. Hi Avery! Bennett and Zoe go to your mommy's school and we'd love to take you to the zoo to feed the animals some day soon! They are having a big party just for very special people (you are definitely included) on Friday April 27 from 5 to 8 p.m. if you can work us into your busy schedule. :)

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  4. awe! Such a good mommy and daddy! You go ababy girl and have your fun! I believe and miracles and will be praying you get one!

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  5. I am so sorry to hear of your devastating news. Our sweet Miller passed away last June with SMA Type I, just shy of his 3 month birthday. He would have turned 1 on March 28th. It sounds like you and your family are taking the same approach that my family and I chose to take. I'm so glad you have such a wonderful support system. Please feel free to contact me with any questions. I will be praying for Avery and your family.

    -Meredith Woodruff
    mwoodruff@knwa.com

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  6. Thank you for sharing this experience with us. Avery is showing all of us what anyone can do. No matter what the age. We are praying for you all every day and will do anything we can to help you accomplish everything on your list and more! I told Julie M. I would love to host your family and friends at my place for a night or day of S'mores & Swimming or whatever else we can do.
    Shelly, Jeff & Haley Schultz

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  7. Words fail me. But, hugs and smiles. Enjoy each and every moment. No one truly knows how many days they have on this big blue planet, but I hope you and your family are happy for every single one of them.

    With love,
    Tina Moss

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  8. My heart goes out to you all! Give precious Avery and hug from us, way up in Lubbock. Prayers are with you!

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  9. This is one of the most inspiring, heroic things I’ve ever read. I cover parenting issues for examiner.com and I would LOVE to do a story on your family and this project to help spread awareness about this disorder, which I had never heard of until I came across your blog. Please email me at lyndee.walker323@gmail.com if you’re interested in answering a few questions for me.

    Best,
    LynDee Walker

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  10. I heard about your blog through Kidd Kraddick in the Morning, a nationally syndicated radio show. I know this is going to be a huge help in getting your blog to go viral. I have also linked your blog from my blog http://shirleyest072005.blogspot.com/2012/04/sma-baby-avery.html
    I hope you don't mind.

    I am praying for your family. I would only hope I could be as wonderful parents as you two, should something happen to my son. Avery has the most wonderful parents in the world, and I am so happy you all are going to give her such a full, amazing life!

    I am in the Richmond area, and I would love to be able to stop by and bring dinner, or help in any way I can. Please let me know if you need anything at all to help meet anything on Avery's list! I want to help!!

    God Bless! XOXO
    Joanna Shirley

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  11. Read about this through a wonderful friend of mine who posted about this blog on Facebook. Breaks my heart when I hear of God's beautiful creations having an incurable disease which ends with loss of life. I have endured many things in my life, one of which is that I am profoundly deaf, and my dear sweet parents, especially mother, worked hard to make sure I could survive in a hearing world. I am a mother of four boys, and it terrifies me to lose any one of them. My niece was diagnosed with juvenile diabetes when she was a toddler, and then not long after that, my mother was diagnosed with ALS (Amyotrophic Lateral Sclerosis - also known as Lou Gehrig's Disease), which is very similar to the symptoms of SMA. My mother had it for over three long years, and it was H-A-R-D. She passed away over a year ago, and I'm still coming to grips with it. So, I can totally understand how you feel. I'm glad you are taking a wonderful approach to this, and have fun while she's still alive. I love that her middle name is Lynn because that is the 2nd part of my first name (I have no middle name). She is a very beautiful girl, and one thing to add to the bucket list is to treasure every moment with each other!!! <3

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  12. Sharing your story! I am praying for you and i know that your amazing mommy and daddy are going to take you on some awesome adventures! What an awesome family you have and you are simply precious! God bless you sweet Avery.

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  13. Hey guys, my wife and I just had a little girl (Avi) a couple of months ago, and so your story really hit home.

    I own an exotic car experience company in Austin, and I would love to do anything that I can to help spread the word for you guys. If Avery (and maybe Daddy!) would like to come and ride (drive) a Ferrari or a Lamborghini, please let me know. Jacob@LoneStarExoticRentals.com

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    Replies
    1. This is awesome...I would love to read about this experience!! I hope Avery likes cars!!! :)

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  14. This is inspiring. Avery, you have wonderful parents and a wonderful family. They love you very much and are so strong for you. I'm so glad you have someone to fight the fight with you head on. You are obe lucky girl! Good bless you and your family. Stay strong.

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  15. My first daughter passed away 5hrs after I gave birth...Avery I would love to follow you and enjoy your accomplishments through your story. To your parents, May God Bless you and of course Avery everyday....As you guys cross of items from your bucket list...know there are people in this world that although don't know you personally are on your side and fighting the good fight with you.

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  16. That looks like a super great day breaking the law with your family. :) I can't wait to see you and hope to help with your list. Lots of love!

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  17. Baby Avery God bless you my little Angel.We will be praying for you.
    Daddy and Mommy I would like to send Avery a Blooming Bath I manufacture this new baby product. This is my email malena@msjindustries.com Please send me your address. If you want to see what the product looks like log in to bloomingbath.com

    Please give Avery lots of kisses for me :)
    Malena Lowe

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  18. Avery...you are a blessing and an inspiration. We love the video of you and your mom dancing! And we are happy to see that you enjoyed your tea party. You are precious! Your parents are incredible. God is with you, and you are in our prayers! Aaron, Ashleigh & Avery

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  19. This is your Uncle "Haseeb"! Your mom & dad are one of the nicest couple I know and you are the most precious, beautiful princess I have ever seen. That's makes you very special in our hearts. I want you to know that Uncle "Haseeb" & Aunty "Zoey" loves you and always love you like everyone else. By the way my little son "Adam" is blowing a kiss to you. :)

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  20. I feel so grateful to be able to see your beautiful little girl and read her story, who ever the writer is has impressed me tremendously. It is so inspiring how you have chosen to celebrate Avery's life with her bucket list stories, photos and videos. Thank you so much for showing that regardless of the situation there is always something to be grateful for and focused on. You both are such inspiring parents, obviously dedicated to enjoying every minute you can with Avery. I loved the video of Mommy dancing to her favorite song with Avery!

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  21. So sweet! Brought me to tears...you go and have fun sweet little girl! Enjoy your mommy and daddy. I'm posting about you on FB right now, your such an inspiration to the world!

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  22. I saw this blog on a friends Facebook post, and reposted! Sweet Avery....you are touching so many lives, and have the best mommy & daddy! God Bless!

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  23. Such a cute blog of a sad story about a little angel. I wish this family all the best, and keep spreading the word to the whole world, its admirable all that your doing for this baby angel and making the best of a difficult situation to say the least, Xo

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  24. Hi Avery, I tried to figure out how to send you an email but obvisouly was unsuccessfull.

    I too have SMA but Type III. My little cousin, Hayden, is 8 weeks old and has been diagnosed with SMA Type I over the weekend and it sure it tough stuff.

    Just a little about me. My name is Jason Mazanec, I am 28 yrs old, confined to a wheelchair, have lived every rewarding day with SMA. My one year wedding anniversary is upcoming this May 7th. I have graduated the University of Texas at Arlington with my Architecture degree. My wife is a Vet Tech at a clinic in Dallas and does Chemo Therapy and Radiation on animals with cancer. Due to the fact I have lived with SMA my entire life and being confined to a wheelchair, shoot me some questions, anything, maybe I can give some pointers as to help out, for instance the whole water stuff. I love getting in the pool, the feeling of movement is amazing. Looks us up on Facebook, Leisha N Jason Mazanec or shoot me a email, jason.mazanec@yahoo.com. Stay strong, build a muscle!! -Jason

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  25. What a blessing she is. Her blessing is that she got to be with you here. All my love and prayers for you all for this time in your lives.

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  26. Hi Avery! You looked so beautiful on the Fox News last night. Your Daddy, Mommy and Friends are doing such a great job getting the word out on SMA.Please let your parents know that there is an organization (I am sure they allready know this)called curesma.org that looks interesting. I have also been seeing there is some stem cell research being done and although I dont know a lot about it, we have some umbilical core stem blood cells banked and if there is any possible way it can help, we will. Love Chris and Michelle Felch (Haven's parents)

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  27. I hope the you do not mind that I have shared about your story on my blog tiarasandbowties.blogspot.com about Avery's story. I know it's not much but perhaps it will reach some more people to spread the word.

    My daughter Alexis was born with another genetic disorder called Albrights Hereditary Osteodystophy and is currently awaiting results to see if she has yet another related to the Phox2B gene which also effects breathing. I almost lost my daughter 3 times when she was 9 weeks old and it has taken over 15 years to come close to an answer for us. My heart breaks for your family and I pray that Avery beats the odds. i know you are all more than likely overwhelmed with response to Avery's story and bucket list and I am finding myself speechless at this time. I would love to write again soon when I can find the words. Until then, smile, laugh, love and cherish every moment. I pray the days linger and last forever for you all. Much love and prayers.

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  28. you are amazing little avery! And you have the best mommy and daddy a little girl could ask for. Keep on checking the joys off your bucket list. I've posted to my blog, fb and twitter page to help you get more views.. Many blessings to you beautiful!

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  29. Getting here and read thru the posts made me cried non-stop. May God be with lil Avery and have her cure... Be strong parents... Blessing will be with you all....

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  30. Hi Avery,
    I had a little boy like you. His name was Michael. He was born on Oct. 9, 2008. He was diagnosed with SMA type II when he was 9 months old. He passed away at 23 months old on Sept. 13, 2010. He never had a bucket list but he did lots of fun things everyday. He swam at the local YMCA almost every other day. He even had his own hot tub that he would float around in with his mom. He went shopping and out to eat every week. He ate cupcakes almost everyday sometimes 3 times a day (with his friuts and veggies) His favorite thing he got to do was go horseback riding. He loved it!
    Keep going with your bucket list, live life fully!
    Janet

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  31. Dear Avery,
    My name is Jack. I am 6 and I really think you should go to the zoo! It's my favorite place in the whole wide world and there are lots and lots of very cool animals to see. I hope you can go soon and my mommy and I are praying for you and she says she's sending out healthy healing vibes for you. Good luck and have fun at the zoo!
    Love and hugs,
    Jack from New York

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  32. God BLESS you and your family! You are LOVED!!! <3

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  33. This is so amazing. My little brother Luke died from SMA, and although this kills me to read(so many things he never had the chance to do) I am so grateful Avery is having the chance to live. Spend as much time as you can just being with her and loving her. SMA babies are little miracles. Much love and sympathy.

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  34. Your blog is in Australia now and doing the rounds. Our hopes and wishes go out to you all. Keep living life while it's yours to live sweet girl. You are all inspirations.

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  35. Miss Avery, I just stumbled across this while looking for something else. What a beautiful and amazing little girl you are! I will pass this on to all I know including my Doctor and his staff. Reading your story made me realize how precious the moments are. May you little Miss Avery and your Mommy and Daddy have lots more special moments. Thank you for sharing your story.
    Love,
    Faye Gardner
    Suffolk, VA

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  36. I think you should visit Kansas.

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  37. I too stumbled across Avery's blog and her picture was captivating while her story was heartbreaking. So sad to know that your little girl never got the chance to grow up, but you guys made the most of every day for her while having to watch the inevitable showing your amazing strength and love for your angel that was taken too soon. I too had never heard of SMA and I will certainly spread the word so that others may prevent, or at least be made aware, the suffering your family has had to deal with. I will post her story on FB later (don't want to get busted on there while at work).

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