Saturday, April 28, 2012

Lots of Fun Stuff...It's About Time!!!


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.


Today started like most days, I woke up, ate breakfast through my glam-tube, took a bath, and then checked my blog to see if anyone is reading my story and helping me spread awareness about SMA.  Well, when I woke up yesterday I had 480,000 pageviews and as of right now I have 1.29 million pageviews (and that number is increasing by about 2.5 pageviews per second).  Holy...Shitake mushrooms??? Umm, I'm not certain, but I believe they are with the rest of the produce sir.  Ugh sorry, do I look like work here?  Anyway, where was I?

Oh yeah...I also noticed there were a lot more blog comments, online articles, Facebook Fans, and Twitter feeds about me.  So thank you to everyone who has been following me and everyone who just started following me.  Don't forget to share my story with everyone you know!  But make sure when you tell people about me, you tell them I'm not dying, I'm living...and they should be too!

Now before I tell you all about my last few days of fun, I want to make sure you know that just because two people are carriers of the SMA gene doesn't mean they can't or shouldn't make friends for me.  All it means is that if they go about making me a friend the natural way (ewww yucky), then they KNOWINGLY stand a 25% chance that my friend will be born with SMA and a 50% chance that my friend will be born as a carrier of SMA.  Their alternative to making me a friend without doing it, tee hee no pun intended, the natural way (again, ewww) is to pay for something called In Vitro Fertilization...whatever that means.

In all of this, just remember, I'm a 5-month old, well actually I'm 5-months and 17 days, so technically I'm like 5 and 1/2 months old, but my point is, don't take it from me.  ASK YOUR DOCTOR and then you can proceed making the best decision for yourself & your family based on everything you know and whatever you believe in.  As for my mommy & daddy, they are doing everything they can to show me how to live free and enjoy life as it's been given to me.  And I think my daddy summed it up best when he whispered in my ear, "Scuttlebutt, your mommy & I love you just the way you are.  And always remember, you can live life dying or you can die living life.  It's your choice."...whatever that means.

Here's my last few days:
I opened a birthday gift from a stranger!  Thank you I love it!!!




The first family sent me a get well soon card & picture.
I like their smiles and they look good for being the first family ever!





























I got a new stroller from Families of SMA.  Don't tell daddy, but
I think he messed up because there is no radio & it doesn't fly.








Mommy said she'd get in with me if her legs weren't so long.
Daddy said ... just know he lost 2 points for his commentary.

























I'm somewhere in there I promise!  Oh and
I love my pinwheel!!!

Roll it up...pat in the pan...
Domino!






Whoever said getting a tattoo doesn't hurt is a liar!

Mommy & daddy had to sedate me after my tattooing.






















A stranger had a lemonade stand in my honor and sold 3 cups
 for $48!  Daddy wants to know what was in that lemonade!

1,000 smiles :-)  Now that's creative!

Lastly, I want to say THANK YOU to everyone who has shared my story, put on fundraisers, and sent me letters, cards, gifts, donations and other fun stuff in the mail.  While I can't begin to thank everyone individually, I did want to send a special thank you to Ms. Wright's 5th Grade class in Browns Valley, CA for all my sweet letters of encouragement.  So thank you Ms. Wright, Jordan, RJ, Alice, Trevor, Michael, Alexa, Grace S., Andrea, Adam, Morgun, Jacob, Grace M., Wyatt, Logan, Dillan, Matthew, Jessica, Robert, Faith, Hallie, Liam, Claudia, Carissa, Cody, Leticia, and Austin.  Mommy & daddy read all of your letters to me and they definitely made me think about how lucky I am to have such great friends I've never even met from California!

Items I Can Scratch Off My Bucket List:
1. Open a birthday gift from a stranger
2. Teach the first family, and hopefully not the last, about SMA
3. Build something with my daddy
4. Play with a pinwheel
5. Mold my hands for mommy & daddy
6. Get my first tattoo
7. Get 1,000 smiles mailed to me
8. Inspire an entire family to work together to help me spread awareness
9. Inspire an entire 5th grade class of my friends to write to me.

Up Next:
Take me out to the ballgame & then whatever I bring to life, because I don't have time to wait for life to bring anything to me.

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.

103 comments:

  1. Avery, your bonnet is BEAUTIFUL! Your daddy is funny and your mommy is pretty and YOU, missy, have a tattoo! Good for you - everybody should have one. Oh! It looks like everybody DOES. :-)

    Have a wonderful rest of the day, sweetie. I'll be back tomorrow!

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  2. First of all, I wanted to say that I'm sending thoughts and prayers from Fort Worth. Avery, you and your amazing family are such an inspiration. The hello kitty tattoo is adorable!!

    Mike, I was wondering if it would be okay if I met you family if I'm ever the Houston area? If so, I can message you. Hope that is alright.

    Once again, Avery, you're awesome baby girl!!

    Sincerely
    Becky S.

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  3. I love your tattoo, Avery!!! Thinking about you and sending hugs (and smiles!!) from Maryland :-)

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  4. What a fun day!!! :-) Sending you my daily hug. xoxo

    PS Liam says hi.

    Rizza from MD

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  5. I saw you at the game last night, Avery!!! Tell your mom and dad they truly inspire me. Not a dry eye to be had around me at the stadium. God bless!!!!
    Jennifer

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  6. Why are you accepting that Avery will be dead at 18 mths. There are hundreds of kids with SMA Type1 who live quality lives right through childhood and into their teens. Please read the comments from other SMA parents on your Facebook page. I don't like to assume anything but I don't think you are being proactive in learning protocols to keep Avery alive instead of ticking things of a bucket list cos you have accepted her death. That is so not fair to her. Please read the comments and contact other parents and LEARN what you need to know to keep Avery alive for years, and a quality life, so that she can one day write her OWN bucket list.

    Also, find out the real facts about SMA research. The MDA is not the org who is best suited if you want to raise money for research. They focus on Muscular Dystrophy NOT SMA. Please read and educate yourselves before its too late. You have garnered enormous public attention now - you have an OBLIGATION now to put out the TRUE facts so other SMA families don't suffer as a result of misinformation you publicize in the media. Please.

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    Replies
    1. SERIOUSLY?? they wrote both organizations down if people want to make donations. They choice is ultimately ours. I along with millions love what they are doing with Avery. They are living each day to fullest as we all should be because nothing should ever be taken for granted. We are all entitled to our opinion but I really wish there was a DISLIKE button!

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    2. It is very presumptuous of you to say they have accepted that they will lose Avery at 18 months. I am very sure they are doing EVERYTHING possible to help their precious daughter beat this.

      The point of the blog is to raise awareness about SMA; something most of us had not heard about before reading their blog. So on that point they have already done a great service to the world. It is grossly unfair to say they are disseminating misinformation. Now that Avery's parents have generously made so many of us aware that SMA exists, we are the ones who need to be proactive in educating ourselves about this condition. They are not obligated to us, we are obligated to ourselves and our families to find out everything we need to know about SMA.

      The point of the bucket list is to help Avery live every day to the fullest and to make wonderful, beautiful memories, regardless of how much time she has(something we should all do!)

      It takes a generous and brave heart to do what Avery's parents are doing. Eighteen months or eighteen years, Avery's life has already impacted the world in an enormous, profound and positive way and for that I say:
      Thank you Avery and thank you Avery's mommy and daddy.

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    3. Several questions regarding your statements: first, are you a parent? Second, are you a doctor who specializes in SMA? Third, have you seen this child's chart, diagnosis, or prognosis first hand? Have you spent sleepless nights with Avery, rocking her to sleep, knowing each night may very well be the last? Until you are in the trenches with them, you have absolutely no right to presume any knowledge about the situation. Every day, there is hope. That is why the list exists in the first place. Because you pray she lives and makes it through to finish. Because if she does, you make another list, and another, and another. Because every day she has is a gift from God, and because He counted her parents worthy of that beautiful child, and of that impossible challenge. What is better; to live behind a delusion of health, or to accept that there may not be a tomorrow (true for all of us) and to live each day accordingly? Well done, mom and dad. Know that one day, if she does finish her race, you have done it right.

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    4. Expectations (prognosis)

      The lifespan in SMA type I is seldom longer than 2 - 3 years. Survival time with type II is longer, but the disease kills most of those affected while they are still children. Children with type III disease may survive into early adulthood. However, people with all forms of the disease have worsening weakness and debility.

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    5. Expectations (prognosis)

      The lifespan in SMA type I is seldom longer than 2 - 3 years. Survival time with type II is longer, but the disease kills most of those affected while they are still children. Children with type III disease may survive into early adulthood. However, people with all forms of the disease have worsening weakness and debility.

      Delete
    6. Expectations (prognosis)

      The lifespan in SMA type I is seldom longer than 2 - 3 years. Survival time with type II is longer, but the disease kills most of those affected while they are still children. Children with type III disease may survive into early adulthood. However, people with all forms of the disease have worsening weakness and debility.

      Delete
    7. Expectations (prognosis)

      The lifespan in SMA type I is seldom longer than 2 - 3 years. Survival time with type II is longer, but the disease kills most of those affected while they are still children. Children with type III disease may survive into early adulthood. However, people with all forms of the disease have worsening weakness and debility.

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    8. I am fairly certain that a family that loves their daughter this much (bringing love and life into her tiny world) already know, and further are doing everything for her. Since you aren't there to judge, you need to be more respectful and supportive instead of just assuming that they are neglecting their duty to do everything possible for their daughter. What they choose to share with us are the happy times. They aren't journaling her dictor's visits or difficulties with her feeding, etc... They are sharing the beauties of her life. I for one am inspired and touched by their positive outlook. They aren't living their lives waiting for the end, they are living life to its fullest.

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  7. I love that Daddy lost points for his comments on the wagon situation, he sounds like the Daddy in our house who is net-negative for all of his witty comments. Looks like you've had some amazing days, congrats on that tatt! It looks fab, babe!

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  8. I found you this morning through another link, & have read the entire blog from the beginning. You are an amazing little girl, & your parents are so lucky to have you. Your story made me cry, & smile, & made me ever so grateful for the blessings I have. My little boy also has an incurable disease, but doctors have found a way to treat it. He has type 1 diabetes. I go through a lot every day to keep him alive & well. I will keep you in my thoughts & prayers, & will pray for a cure or treatment for you & your friends. Thanks for sharing your journey with the world. :) xoxo

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  9. Avery, I enjoy going to your page and reading about your adventures you've done. It breaks my heart and makes me smile all at the same time. I have two children a son that is 4 and a daughter who is 1. Until coming across your page I have never heard of SMA & neither has others I've talked to when telling them your story. It also concerns me they don't offer a test to check for SMA when they check for everything else. I promise you Avery I will let others know about you & to talk to my OB/G about offering the test to people. Keeping living life to the absolute max & please always keep smiling!!!!!!!

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  10. Wow Avery! A REAL tattoo! You are one very brave little girl. I am 33yrs old and am SCARED to get a tattoo! I have been following your blog and you have touched sooo many lives. I love that precious little smile of yours. Live it LARGE, big girl!!!

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  11. I started to read your blog Avery, but I am a bit uncomfortable with your Daddy's solicitation for money. Also, I am wondering how an OB/GYN can detect SMA, blood work, dna? Hope you're hanging in there. Praying for you and hoping your Daddy doesn't ask for money every time he posts something on your behalf.

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    Replies
    1. From one Kathleen to another, am I the only one concerned about the tatoo?

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    2. They can detect the gene through blood work. Also, they are asking for donations to go towards SMA research because the research is not currently being funded by grants or the Gov. If he was just wanting people's money he wouldn't tell people how to donate to Fight SMA or the MDA. If I had a child that had SMA I'd be encouraging people to donate every chance I got as well.

      To Avery and Her Mommy and Daddy: Keep up the good work! I'm praying for you sweethart!

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    3. Ok again.......SERIOUSLY??? If you want to send money to a good cause or not is your choice. I in no way have seen this as a solIcitation for money. I am glad they put that statement at the end of each post. Fundations and organizations need money to fund research. Geeeeez! Please Pray and Hope for Avery and every child with SMA and ignore any statements that make you feel comfortable! Another DISLIKE!!

      PS sorry Mr. Canahuati but these type of posts tick me off!!!!

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    4. @ Kitty, it's a temp tat, not a real one :)

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    5. I am very concerned about the Tattoo!! Are they for real??

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    6. Kitty, it's not a real tattoo. And Kathleen, he is not soliciting for money. If I had a child that needed an organization that wasn't being funded, you bet your life I'd be posting and fundraising and asking for donations to that organization. He wasn't asking for people to give them money. He wants to spread awareness so that children can get cured in the future. Avery, you are an angel. You inspired me and I will be doing what I can to help others with SMA. Thank you for sharing your sweet journey and inspiring so many. You truly are a beautiful soul. I know your sweet family knows how much you love them and how you're looking down on them. Thank you for living life to the fullest each day and for smiling that beautiful smile.

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    7. It's definitely not a real tattoo--it's a temporary one. Notice the whisk "needle"?

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  12. Wow! You have been busy young lady! I have been checking your blog daily and these morning right before I went to work I checked again and saw all the views! Way to go Avery and crew! You are spreading the word. I will continue spreading the word as well. Hope you are having a good weekend:-)

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  13. Hi Avery,

    Next Saturday, May 5th is Lemonade Day and children all over the country will sell lemonade to help them learn how to become entrepreneurs. We are encouraged to donate a portion of our proceeds to charity and we are honored to donate to you. We're even going to have little cards with your picture and blog site so people can read your story. Do you have a qr code? I'm sure many people with smart phones would prefer to use that app. We're encouraging our friends who don't have cause in mind to pick yours. If you are even in New Orleans, we'd love to meet you!

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  14. Hello Avery I just started to follow your story today I have really been inspired I will do all I can to spread the word to everyone about sma. And don't worry on May 1 I will bug Ellen as well. Stay strong and enjoy life!

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  15. Brought a smile to my face :) <3

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  16. Oh my little Avery...you are a beautiful baby making a huge impression on so many people. I have been reading since your blog was mentioned on the MSN homepage. I have a new baby girl myself, Sophia (7 weeks old). I don't know how much grace and humor I would have in your mommy and daddy's position, but am so thankful your daddy has such wit! It makes reading your blog enjoyable and entertaining. Almost makes you forget how sad your story is. Almost... Keep up your quest in spreading the word on this disease. I know you have already opened so many eyes to it already! God bless you and your family and know you have prayers, smiles, laughs & tears coming from Montana.

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  17. You'll be SO happy you made that mold of your hands, Avery! I did that with my little boy when he was your age, and now he's 17 and TALL. :-) Every Christmas when I take out that ornament (he did just one hand), I remember how excited he was to make that mold when he was just a little boy.

    Hugs from Philadelphia!

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  18. Avery we love your new ride and your fun kitty tattoo! Thank you for sharing your sweet spirit with the world. You are an amazing little girl and a beautiful daughter of our Heavenly Father. You have touched our hearts and inspired us to be better.

    ~The Sparks Family
    Bossier City, LA

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  19. Thank you for sharing Avery's story with all of us...you are a very talented writer and made me smile many, many times while reading! The 3 of you are a beautiful family and Avery is blessed to have such wonderful parents showing and sharing with her the good things in life. God bless you all.

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  20. Hi, Avery! I like your new wagon! It is the same one your cousins Sadie and Haley have. Sadie likes it when her Daddy pulls her really fast and she loves your idea about attaching a pinwheel as a rocket-booster! We think you looked fabulous with the Hello Kitty tattoo and think you are the cutest, most beautiful baseball player ever! We are telling everyone we know about you and SMA, including our friends in Canada, Scotland, the Netherlands, and some Wolfe who refers to himself as an American Picker. He is following your story too. I am also making it a habit to share your story with everyone I talk to in public, including anyone who buys antiques from us. We love you so much, Avery!
    Love,
    Melissa, Dave, Haley, and Sadie :)

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  21. I really do believe that God made wonderful people like you and your wife so people like me can learn LIFE IS WHAT YOU MAKE IT! I wish your family the best.

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  22. I just love the hand molds!

    We are praying for you and spreading the word. If there is anything I can do, just email me! I'm happy to help in whatever way I can!

    Sara

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  23. Wow Avery you are one special little lady. To Mommy and Daddy unbelievable how strong the two of you are. All of our prayers are with you as you enjoy this beautiful life, no matter how short or long. Please know that someone in Kentucky thinks you are one AMAZING doll baby!

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  24. Sweet girl, you were born to the correct parents that is certain. They are the best and so are you!
    Love you little girl,
    Donna
    s/v Dutchess StThomas, USVI

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  25. First off, I love your name, Avery. It's such a pretty name just like you are such a pretty little girl. Avery, you are such a lucky girl, God gave you the best mommy and daddy anybody could ever have. I just know you and your mommy and daddy have many fun times to look forward to and each one will be as special as the one before.
    You and your mommy and daddy are in my prayers. Thanks for sharing your story and teaching me about SMA.
    Hugs and kisses,
    A mommy in Georgia

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  26. Why get a tattoo for a baby? Am I the only one concerned about causing unnecessary pain? Avery, I hope you'll be the miracle baby to live through this. The world love you.

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    Replies
    1. It's not a tattoo, it's a temporary one. The "needle" is a whisk.

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    2. Jane, this was my thought too. I can't understand why her parents would put her thru this kind of pain. It's not like they can anesthetize you for a tatoo. As much as I sympathise with her parents and this whole situation, I feel it was cruel to inflict a tattoo on her for the sake of the parents. They could have had a portrait tattoo of her put on THEIR own bodies, whatever, and leave her out of this painful process. Seemed kinda selfish to me.

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    3. You have got to be kidding me. Do people really think that tattoo is real. You can just look at it and tell it's painted on. Every child that has ever attended a school fair has had one of these painted on. And I don't even have the time to discuss some of the rude comments I've read about her family. They are only trying to raise awarness for a horrible disease. Asking for money to be donated to SMA organizations is NOT solicitation. I can't even imagine being anything but supportive for someone going through something as devastating as this. I for one think what they are doing is amazing. There will be countless parents not having to go through such a unbearable diagnosis because of what they are doing in Avery's honor!!!

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  27. Nice ride Avery. And the matching tats are just cool

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  28. What a beautifully creative way to deal with this difficult situation. Avery, you are an amazingly wonderful little girl with terrific parents!

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  29. Omg,Omg,Omg Avery if the first family knows about you I'm sure Ellen knows about you. I have a feeling you will get a call from her, you can use your celebrity pulls now.

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  31. Avery,
    I saw your story on CNN and can't believe how strong you, your mommy, and your daddy are. You are making people aware of so much. When I have children, I am going to test for SMA because of your story. I know there is a special place waiting for you in Heaven. Once I have extra money, I am sending some your way.

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  32. Your story is so inspirational.I have read you blog from the start today after reading this on CNN. I will continue to follow it and send hugs and prayers to Avery and both of you. From Nova Scotia Canada....

    Fiona

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  33. When I started following your blog there were about 600 other followers and now there's almost 4,000! So amazing to see all the people you are reaching and educating about SMA. I didn't know about it and will be sure to ask to be tested if/when I'm fortunate enough to have another child. I recently shared your story on my blog and was thanked several times for doing so by people who shared it on other blogs/facebook/etc. Lots of love to you and your amazing parents.

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  34. This is so sweet. I enjoy reading all of her adventures/stories. Im 31 but Avery is truly living more than I am......

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  35. You've got people in your corner from all over, babe! Thank you for teaching me about SMA and living your life so fully. It's an example for us all!

    Love & support from Portland, OR.

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  36. Have you thought of getting an Ergo Carrier? They are fantastic. I think she could ride in it since she would be pressed right up against your body and they have an infant insert for head support then she could be right up there in the middle of everything with you :-)

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  37. You are amazing! Is that a real real tattoo? Just curious not judgy :)

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  38. Adorable Avery, your beautiful smile & eyes tell us all how boundless your energy & soul is thriving each day...my hope for you is the same for my Chelsea & Christian...to see a sun rise & a sun set, the moon full and just a sliver, to feel sand between your toes and to let the mighty ocean lick your toes....smell the summer morning, the winter snow, the spring rain and the fall leaves...feel the breeze on your face and the wind in your hair...squint at the sun and listen to the birds...pet animals, ride a pony and get a kiss from a dog. See, feel, smell, touch, cry & laugh...you're living a very full and wonderful life each & every day...You're a Blessing...thanks for your smiles...xoxo Steve

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  39. also wondering if the tatto was really a good idea

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    Replies
    1. You can CLEARLY tell that the "needle" is the beater from a mixer. My God, it's a temporary one you put on with water...

      Delete
  40. The "first family ever" line cracked me up LOL. Praying for you all :))

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  41. Praying for sweet little Avery all the way from Lordstown Ohio.. Mom and dad u guys are doing a wonderful thing. Love that baby girl to no end.

    Andrea W

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  42. Oh I JUST love this post and your blog! I found it a few days ago and I LOVE the sense of humor it is written in! I have already shared it many times! Bless all of you. You both are GREAT parents and your princess is just that...a princess! Cute tattoos! My girls ALSO love Hello Kitty! We are praying for you all! :) Your outlook on life is AMAZING......it really puts things into perspective for me! You're family is an inspiration!

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  43. Avery you sure are a beautiful southern belle!
    Your dad is doing a great job of ghost writing for you. I'd like to recommend him making a "button" for your blog for the rest of us to put on our blogs... He can email me for my "super easy buttons for dummies" instructions, LOL (susanscraps AT comcast DOT net)
    We have a baby girl in our family with a rare and fatal disease also. but so far she is a miracle and just turned 5, when they didn't think she would make it to 1... Her name is Daisy, and it is also something more people need to be aware of...EB...you can visit her at www.beautifuldaisy.com.

    I would also like to make a suggestion (but your mommy probably thought about it already) Instead of having yearly birthday celebrations, have them monthly!

    I think it is awesome that you made a hand mold, mommy and daddy will cherish that always.

    an older mommy in Southern NJ will be thinking good thoughts and sending out healing energy and strength for you parents!
    Love n Light,
    Susan


    PS>>>>to make you blog more visitor friendly get rid of word verification and go to comment moderation instead

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  44. Oh you already have comment moderation turned on...so the word verification is redundant...go into set up, and the comments section and uncheck word verification.
    Susan

    PS...blind people with "computer readers" can NOT comment on blogs with "word verification" as the reader doesn't recognize the code as words, and therefore can not read it for them.

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  45. I do believe you have captured the hearts of many. My son wanted me to tell you hello after I told him about you. His name is Jacob and he is 14, he is living with Duchenne Muscular Dystrophy. We are from Montana and since the 1st night we read about you we have followed your blog. Not only are you very special but your parents are pretty special too, they are pretty unique to come up with such an amazing way to raise awareness of SMA. You are teaching so many about life little one. God bless little angel.

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  46. I do believe you have captured the hearts of many. My son wanted me to tell you hello after I told him about you. His name is Jacob and he is 14, he is living with Duchenne Muscular Dystrophy. We are from Montana and since the 1st night we read about you we have followed your blog. Not only are you very special but your parents are pretty special too, they are pretty unique to come up with such an amazing way to raise awareness of SMA. You are teaching so many about life little one. God bless little angel.

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  47. I love this blog, and I follow it religiously thanks to a friend posting the link on Facebook. I have since posted the link on both Facebook and Pinterest. My 7 year old son has Duchenne Muscular Dystrophy, a muscle-wasting disease that is both terminal and incurable like yours. And whilst I cry about it every day, I read your blog to keep me going and keep me motivated to ensure his life is wonderful and he does as much as he can. Keep on spreading the word, and keep on trying to raise money for a cure.

    And I have to express my disgust in the person who said your daddy's solicitation of donations wasn't to their liking - obviously they don't have a child who is dying and don't feel the need to do whatever they can to spare other children, and parents, the same pain. I hope that your mummy, daddy and you make a huge difference. I will continue to spread the word. xxxx

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  48. Hi Avery from SC..Found you on the yahoo news and now follow you on your blog. God bless you and your family. Thank you for sharing your adventures with us.

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  49. Hi Avery! I have a real tatto, too (just one!) and I agree--it HURT! Yours is so colorful and pretty though, I'm totally jealous. When I was a little older than you I was OBSESSED with Hello Kitty. Your choice was awesome-sauce and it's so sweet that your parents got tattoos, too.

    I wanted to let you know if you ever come to Madison, Wisconsin I would be honored to take you on your first mechanical bull ride or a 5K run. I'd make sure you've got a wonderful audience to witness either (or both!) events and they'd be 100% safe. However, if Wisconsin is a little too far (or cold) for you, I'm sure there are plenty of other nice people who'd love to help you out.

    Stay strong, little one! Lots of x's and o's from up north.

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  50. Avery...are you 100% sure that that tattoo is real? :) That 'needle' looks more like a whisk to me! xoxo, Becca

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  51. I don't know if you have connected with many other families going through the same experience but here is a link to a blog http://cookbookfundraiserblog.gatebook.com/index.php/2012/03/29/506/ and a website of another family I know of www.4anniegirl.com

    Good luck to your family and here's hoping more awareness of SMA will lead to a final cure...

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  52. Sweet ride Avery!! You are such a brave little girl. I never knew I could read something that would make me laugh and cry all at the same time. Your parents are truly amazing people with huge hearts. Hang in there kiddo

    Sending love from Raleigh NC.

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  53. I just donated to your cause. Thank you for showing us how to live.

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  54. The most beautiful statement in this blog? "But make sure when you tell people about me, you tell them I'm not dying, I'm living...and they should be too!"
    Prayers for you and your sweet family!

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  55. Dear Avery,
    You are one special little girl to have so much love surrounding you. Your tattoo is sweet ~ OK, I have to admit I'd say OUCH too! I'd ask for a do over with the radio flyer ~ no radio and it doesn't fly????!!!! I hope you add a picnic, bouquet of pink balloons and tutti fruity ice cream to your bucket list. Going to the baseball game and throwing the first pitch ~ SCORE!! I LOVE the mold of your tiny hands you made for your mommy and daddy! I know they'll treasure it always and forever. Praying for you and your family and look forward to following your blog.
    Blessings,
    Tricia

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  56. Avery you are a beautiful and very inspiring little girl. I pray that your days are filled with a million smiles and infinite hugs and kisses. I have included a link to a song on youtube that I believe your Mommy and Daddy will love. Sending you love from Louisiana! http://www.youtube.com/​watch?v=OXofFc3BBpA&ob=av2n
    The song is Find Your Wings by Mark Harris

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  57. I will be praying for your family, Avery. I hope you can complete your bucket list and more. Some people are given a whole lifetime and waste the years they're given. I believe you will live a more fulfilling life in your short time than most! My son is 9 months old and I will share your story with him someday. I hope you and your family know how much people love you, even people like me who don't know you.

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  58. Avery, I want to thank your daddy for keeping me smiling while I am crying. He is a very brave man and you mommy is very brave as well.
    And you little princess are most inspirational.

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  59. Dear Avery, You are loved today to forever. Sending you miracle sprinkles, may the odds ever be in your favor.
    XOXO
    Ivy
    Chicago,IL

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  60. Avery, I am in awe of you and your parents. What a truly amazing family you are. The strength and courage you all possess is unfathomable. I will say prayers for all of you and ask for a miracle. It is truly heartwarming to see how all of you are embracing life and sharing it together. May every day bring you all sunshine and smiles.

    You are a beautiful little girl! I look forward to reading about your adventures for a long time!

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  61. Guys, I mean no offence when I say this. As a parent myself, I think it must be absolutely excruciating to know that your child may go prematurely. I cannot imagine the same for my kids and count myself lucky to spend time with them each day that passes. But in all honesty, I find it perverse that you are writing this in 1st person from 'Avery's POV'. Let me explain.

    Avery is at an age where a few words and actions would hold meaning, but she doesnt have the capacity to formulate how she would feel succinctly. The concept of a bucket-list and death is well beyond her comprehension. As a parent, I respect the fact that my kids are individuals unto themselves who have opinions and can express themselves. Yet when they are of the age before they come to that self realization and awareness, my wife and I make sure their upbringing is as neutral of opinion from us as possible. Sure, we protect them as best we can. But we can't speak for them, and why would we? We have no right.

    I would connect more to this blog if it came directly from you, the parents, to express how you feel and what you are going through with the daily struggles in this time. That is where the support would come in. I totally admire what you are doing as a fellow parent, but I feel this journey MUST come from the heart, specifically your hearts. Not 'hers'. Your beautiful daughter deserves to live, as do all children in this world. But please make this about your journey ALONGSIDE her, don't hold her infront of you like as though she's a 'talking puppet'. It's manipulative and a little off, plain and simple.

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    1. I respectfully disagree. I think it was wonderful she had parents that did not just sit back and leave her to fate. I believe this was a great thing for little Avery who I am sure felt the love from a great many people and while she might not fully understand she got to do a lot of things she otherwise would not have had the opportunity to experience. I would like to feel this bucket list made her short time with us more fun for her.

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    2. Every family handles their child's mortality differently. Maybe just ignore the voice of the blog posts and hear the message?

      I don't say this often, and certainly not in this sort of forum, but that comment really made you look like an asshole. I'm just this shy of speechless.

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    3. The attention generated from Avery's POV is why hundreds of thousands of people are now aware of SMA and why hundreds of thousands of dollars will now be donated to this cause. It was a way to view SMA in a light-hearted way that led to a connection between the reader and this family. I am glad I "got to know" this family and will continue to share and help make others aware. My prayers to this wonderful family, I hope she gets to meet my grandfather up there...he will take her to feed the ducks!

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  62. You are a beautiful baby girl and very lucky to have such a wonderful family! Your story makes me so sad but also brings a smile to my face everyday. I am praying for you and your family!

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  63. FIRST SORRY FOR YOUR LOST.. I FEEL AS IF I KNEW YOUR LITTLE ANGLE. I READ YOUR BLOG EVERYDAY AND ENJOYED EVERY MINUTE OF IT.. AVERY WAS A SPECIAL LITTLE GIRL WITH LOTS OF LOVE, FROM EVERYONE. MY PRAYERS ARE WITH YOU AND YOUR FAMILY AT THIS HARD TIME..
    SHE IS THE MOST BEAUTIFUL ANGLE THAT GOD HAS CALLED FOR..

    CHRISTINE NAZARIO

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  64. :) Awesome blog! I am so glad you can take the time to enjoy your little girl even though it is such a short time.

    Since your blog has gone viral I would recommend that you sign up for Google advertising so you can make some $$ to help with your expenses. We all know that is not why you have created this blog but I don't think anyone would judge you for trying to help out. I'm sure you expenses are enormous.

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  65. Avery, may you fly free and shine brightly surrounding your mommy and daddy with love. You are one very special and beautiful little angel.

    To Avery's family, I am so very sorry for the loss of your sweet Avery. I know all too well there are no words to take away the pain of her loss but I know the memories of her amazingly full but all too short life will bring you some comfort and smiles amid the tears.

    I only just started following your blog and learned about SMA from a couple I met at a compassionate friend's meeting who lost their 4 month old son to SMA several years ago.

    As a fellow parent who has lost a child I just wanted you to know I am holding you in my thoughts and sending love, light and healing your way. I've asked my Meggie to look after Avery. May your sweet angel rest in peace and may that beautiful face continue to light up yours for all of your days.

    My deepest condolences,
    Kimberly

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  66. so glad you had a chance to keep avery's handprints. you will cherish that little part of her forever.

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  67. I love your blog and am so sorry to hear about little Avery. Your Hello Kitty "tattoos" were adorable.
    I hope a cure can be found someday for SMA and other genetic diseases.
    My heartfelt condolences on your loss.

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  68. Wow after reading this and seeing all the amazing photos of
    Such a beautiful baby girl,it brought tears to my eyes,i will
    Pray for avery and her amazing family! god bless you avery,now
    Your with all the angels up their and my son!!!!!

    Xoxoxoxo prayers from new port richey florida!!!!!!

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  69. I too am very sorry to hear about the loss of such a bright young lady. I have enjoyed following her many exploits, your were great parents and she was lucky to have such a great family for the short time she was with us. Thank you for sharing your story with me and my family. It really makes you appreciate what you have in your life when you see a story about such a bright light.

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  70. I heard about Avery's blog through yahoo. Omg, the love and attention that baby was shown is beyond words. What a brave and beautiful child. I love how a journal was created to capture her most precious moments. May the parents (and family) find peace and strength during these difficult times.

    Thank you so much for sharing Avery's smile with the world.

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  71. I just want to tell you that as a young mother of 2 baby boys, it is an Inspiration reading Avery's blog. The way that you have choosen to maintain her quality of life is Amazing. I wish you peace at this time as I believe that Avery will live on in the hearts of many. Thank you for sharing her journey, you both are great parents and I look up to you.

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  72. I feel for you and understand completly your loss. My beautiful daughter was diagnosised with SMA when she was three weeks old and
    Shared five and half wonderful months with me, That was back in 1991 she should of been 21 years old last month. I will pray to help ease your loss and heavens great gain.

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  73. I am SO sorry for your loss. I recently read Avery's blog for the first time and it truly touched my heart. She was blessed to be born to parents who made every single day count. You are the example that all parents should live by; thank you for sharing her with us.

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  74. Sorry to read that Avery has joined the Angels. I want you to know that my son, Daniel, who arrived there nearly 8 yrs ago, greeted her warmly and showed her around. They skipped and ran, talked and sang--activities that they both were unable to do on Earth. They were made 'Perfect' in Heaven and Avery (and Daniel) await the arrival of their parents patiently.

    I'm glad you were able to do those hand prints and take that beautiful 'last picture' and you will treasure them always. I assure you that no matter how much you understood that Avery would one day be gone, you can never be prepared for this day.

    Be gentle with yourselves for this next year, as it is filled with "Firsts". Her brief life had such events as "first baseball game" and "first tattoo", but now you will have "First Mother's Day" and "First Father's Day" and your hearts will grieve even more. God Bless you both and may He bring you peace.

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  75. Hi Avery's mom and dad,
    I wrote you earlier-I am the sculptor/artist that does the handprints. I see you got her prints in Sculpy. I can take that mold and make master molds of them without destroying your original and make all kinds of beautiful ceramic keepsakes from them by mail. The beauty of ceramic is that is does last literally forever. And if it was to get dropped or break, I can use the master molds to make a new one. Please contact me. Monica Lasich, The Handprintlady at 949-257-9176 or handprintlady@hotmail.com

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  76. Avery was a very beautiful little girl. I just found your blog last night and had to read the entire thing. The idea of a 'bucket list' for a 5-month-old little girl was such a striking thing for me. She not only reminded me of how precious our time is, but also inspired me with how to set my own goals/write my own list. While I may not have SMA, a different disorder has been a challenge. I had not known how to go about setting goals for myself, and Avery showed me how even the simplest thing that pops into your head as a "I'd like to..." or "I wish I could..." could be written down and pursued as a goal or something to achieve. I just started writing my list tonight. Thank-you so much for this.

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  77. Cute!!! Congratulations for the super cute baby.

    Perlengkapan Bayi Online

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