Avery passed away April, 30, 2012. Please continue sharing her story in an effort to raise awareness about Spinal Muscular Atrophy (SMA). Thank you!
I want to be a big sister someday.
Blow bubbles with my mommy and daddy.
Go shopping with the girls then come home and tell daddy we spent about 1/2 of what we really spent and then hide what we bought under the staircase.
Go viral on the internet - I know I'm not singing a song, doing anything funny, saying something politically incorrect, or anything like that, but it would be nice if my story went viral so that SMA has a face.
Be on the Ellen Show - maybe she can help spread the word.
Meet Oprah - maybe she can help spread the word.
See where my mommy, daddy, and my aunts & uncle grew up.
But if not, then I'd like to take one last breath, then take one more before I go to live with my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents (Tommy, Laura, Jim, Walter, Julia, Joseph, and Audine).
Help me add to this list with anything you can think I should do in my lifetime. Anything from birth to adulthood and remember all ideas are welcome and if possible my mommy & daddy will find a way to make it happen.
Make a sandcastle at the beach with my Mommie and Daddy and play in the mud puddles and blow bubbles..
Make snow-angels and climb a mountain with her mommy and daddy.
Hey Sweet baby! I would like to see a SMA foundation with your name on it listed with the Chevron Houston Marathon's Run for A Reason Charity Program so I can enlist my fellow runners to educate others and to help raise money for this cause. You know us runners are a powerful group. We love to run, but we love even more to have a very good reason to run. I can't think of a better one than you!!!
These are some of our favorite winter activities. Come stay with us and we'll show you some winter fun! It's the best time of year! We love you and pray for you every day, sweet Avery. Xoxo from Minne-SNOW-ta!
I would love to help with an awareness event, in any way I can. In my opinion starting with a 5k would be ideal. You your family and friends can run in it to add to your bucket list! I live in San Antonio and could be very hands on with local running groups here, or do what I can to help if held in Houston. I would also be most honored to run in an event, in either city, in your name and honor :) Smiles and prayers!
I would love to be a part of this too. I work for lululemon athletica in Houston and we have a large Run following. I would love to help arrange this and spread the word. It could be huge!
My name is Lacey and I am very good friends w/ Laura and Mike. I'm helping them out w/ the outpour of help and offers they've received from everyone, including you two. I am also a runner and want to put together a run for SMA and Avery, but will need help. Would you guys mind sending me an email w/ your contact info? I will need all the help and guidance I can get with this, so thank you very much!
I do not know you or your parents but found your blog thru Facebook. You are such a beautiful little girl and I want you to know that I am praying for you and your parents. You need to let a puppy lick your face Avery! I know, it sounds gross. But puppies have a way of bringing an infectious joy to the people around them. Also, have someone pick a flower for you and put it in your hair and take a picture of you. Listen to your mommy and Daddy read you a Dr.Seuss book. And my friend sitting next to me says every child should eat a peanut butter and jelly sandwich. Enjoy the journey of crossing these things off of your list!
What a blessing to wake up and read your inspirational story. While my heart breaks for all touched by the pain of your SMA; it also swells with joy that God chose to give you to such a wonderful mommy and daddy. My guess is that he knew they would make your all too short life special. You are a gift to them and the many whose lives you will touch bc they have chosen to share their gift (you :) with all of us. Wow. Thats pretty amazing that they have the strength to do that, but there is nothing stronger than love and it will lift you all higher during the good times and it will hold your mommy, daddy, & you up when things are rough. It has tremendous power; as you can already see from the many people who are sharing your story and sending you things to add to your bucket list. I can't wait to see what life holds for you!
Go to the Zoo - Any Zoo, they're all wonderful. However, my favorite is the Henry Doorly Zoo in Omaha, Neb. If you go in July, you could also go to a College World Series baseball game - another great add for your bucket list!
Watch the Saltgrass trail riders come in to town for rodeo. I suggest a viewing place in Katy - Morton Ranch road after they leave Katy Park is pretty amazing to see them all on their horses and wagons - My boys loved it when they were little.
Watch a sunset and sunrise over the ocean or a lake.
Visit the mountains in Colorado.
And yes, go have your picture taken in the bluebonnets. They're beautiful!
Take pictures of all your adventures and your everyday experiences...An most of all, Have Fun!
I just found your blog through a friend's post on Facebook. I wonder if we can add and cross finishing an Ironman triathlon off your list?
Let me know what you think. Ironman Texas is May 19. We might be able to work with the race director and get you across the finish line.
Im so sorry about the recent diagnosis. Our son Nathan passed away almost two years go from SMA. He was 6 1/2 years old. Although SMA is a horrible disease these children truly are angels on earth and we as patents are very blessed to be touched by their spirit! Your positive attitude and outlook is remarkable! What a beautiful little girl you are Avery!!!! Feel free to check out nathans blog . Hugs!
My name is MJ and I found your blog through Miss Jennifer (she wrote you above)...through the internet, so you're one step closer to going viral. I have SMA type 1 also and am 24 years old. I've done lots of your bucket list items but you have definitely inspired me to make my own bucket list.
Should you decide that you would like to receive a blanket, please e-mail me with your post address, your favorite color, full name and age. All we ask in return is a picture of you with your blanket covering you. Also, if I can help answer any questions your mommy and daddy may have regarding SMA, please tell them not to hesitate to email me at any time. I am not afraid to answer any questions you might have. Big hugs to you and your family.
What an inspiration you may be to this family! Best wishes to you all!
Avery, What an inspiration you and your family are! You are so beautiful and truly an angel from God. I am helping any way I can by posting to my facebook page, asking Ellen to have you on her show, and emailing friends this link so everyone can be aware of your bucket list and SMA. Is there any place we can send donations or things on the bucket list for you to have? If so please let me know!! God Bless you little princess!
There are a few other things you can add to your bucket list that I would love help you with. See I met your mommy and daddy in San Marcos where we attended college. It would be so fun to show you the best apartment complex there aka Bishops Square. Your mommy worked there when I moved to San Marcos and then I got to meet your daddy. We had a lot of good times there and so many beautiful places we could show you. We could walk your through the quad of the campus, take you to where our mock baseball team "happy hands " used to play, show you what spike fest is all about and most importantly take you on a river trip. The most important thing you need to remember is that you were born to the two most amazing people I have been blessed to meet.
Love everyone and be loved by everyone!
That's all I have for now but there will be lots more to come from Aunt Lacey & Uncle Ryan!!
Grow a mullet - and like it!
Here are some items to add to your list: get your drivers license picture taken so you can always talk about how bad it is, get your passport, go to an 80s theme party (all girls love the 80s) and see a play in NYC when you go! I have spread the word about your story in my office and everyone is thinking of you and praying for you. You're such an inspiration to us all!
Reading your story, Miss Avery, has inspired me and has reestablished my lust for life. You and your family are stronger then anyone could ever imagine having to be. Faced with such a tragic situation, yet so happy just to have what little time you do with your loved ones. Your smile has put a smile on my face and I can honestly say that your impact in this world will continue to inspire me and others. The happiness that you and your family & friends are sharing in your short amount of time with us is beyond the happiness most people could say that they experienced in their long term life. I'm graduating from Florida State University on April 28, 2012 and would be proud to take Avery across that stage and see her beautiful smile inspire everyone. I will be thinking about things to add to your bucket list, Avery, but if you make it to Florida I would love to help 'Live it Up' with ya'll!
Go snorkeling in the Bahamas! I can't even begin to imagine what you guys are going through, but know that because your family cares enough to let people know your story, your sweet little face will be known, probably world wide. Everyone will know that Avery is here now and somehow some way your memory will live on forever. Have fun on your journey and experience as much of life as you can! I truly wish you all the best.
I have a 8 month old son who would love to have a play date.. You can throw dirt in each others hair... Finger paint, eat baby cookies and not have a nap all day! Your in my prayers sweet baby. God is holding you in his hands and you will be able to all the things above and much more. Your aunt mentioned some things for a guy to do for and my little man is the perfect one for the job. :) Blessing to you and your family.
Wow I was overwhelmed with emotions when I read these, you are truly amazing people! I coach a little girl 8 and under softball team and we would be honored to have Avery as our honorary captain one game and throw the first pitch!!!!
If you'll be in Dallas this Saturday or next Saturday you're more than welcome to come by our kiddo's game and make a goal!
I will praying for you and your family everyday. Your strength is amazing, and you are truly an inspiration!
Praying you can complete everything on your list and much much more!!!
P.S. I came to your site from a link on Facebook, I will help your story go viral!
AVERY, My fiance and i are getting married in New Orleans oct of 2013. We have a daughter who is about your age named Catherine! She made 6 months on the 5th of april. She is going to be our flower girl, but i think she may need some help walking down the aisle. So if you are interested, maybe you and catherine can walk down the aisle together as my flower girls. Thank you for sharing your story! It truly is an inspiration!! You may have a horrible disease, but you also have something that ALOT of people arent as fortunate to have and that is a loving family who is devoted to making you happy. That is something to truly to be thankful for! :) take care and keep smiling, dear!!
hi sweet little miss avery!
if you ever make your way to austin- we would love to help you with one of your BIG things!
race in a sports car!
my husband owns lone star exotics [www.lonestarexoticrentals.com] + we would love to chat with your mommy + daddy about scratching another thing off your list.
we have a 2.5 month old baby girl as well- named avi, who can't wait to meet you!
This is sweet and sad, but I'm glad all of you are fighters! I'm sorry and I'm praying.
Here are a few things to add to your bucket list.
~ Stand on your Daddy's or Grandpa's feet to be able to dance.
~ Bake chocolate chip cookies and lick the spoon.
~ Make manicotti with your Mommy.
~ Sit on the stage at any concert (local, big, public - doesn't matter - the experience is cool no matter where it happens).
~ Go to a petting zoo.
Hi there Avery. My name is Brandy and I'm a photographer in DFW and I'd love to take a day and do a photoshoot with your and your family. Feel free to contact me anytime and we can make a lot of memories.
Find a four leaf clover and catch lighting bugs. You are an amazing little person Avery! Keep on making great memories!
Make Chocolate Chip cookies with Mommy and Daddy and eat half the cookie batter.
Dance in the rain on a warm spring day.
Pour out all of your toys from the toy box that your mommy and daddy can't see the floor of your room!
Go on a car trip to NB and continuously ask "are we there yet?"
Have your mommy and daddy kiss you and then wipe off the kisses and just smile sweetly about it and laugh when they get mad.
Make a wish upon a STAR...God Bless you!
I wish I was still in Texas or you were closer to Oregon. I'm getting married in 2 weeks and would love to have had you as my flower girl!!! God Bless you and your family!!!
Dearest Avery, I coach 2 soccer teams in Victoria and would love for you to come and play for a day. If that won't work out you could ask your Mommy and Daddy to send a picture and you could be "in the game" with my kids. Not only could you score a goal with my daughter, you could play goalie with my son! Something you could add to the bucket list and then two to cross off. Let me know if you might like to come. We would love to have you. tell Mommy or Daddy they can email me at tisha_franz@yahoo.com.
Avery, what I think you should add to your bucket list is winning a goldfish at a carnival or fair! You could even take your new pet on the ferris wheel for the ride of his life. Sway the car and watch the water in the bag swish back and forth. He'd be the lucky one as you meander through the barns because he wouldn't have to smell their stinky poo. :) stay late for the rodeo! Sneak him some cotton candy on your way home.
Go to Sesame Place outside of Philly and the Philly Zoo!
Go to the beach; stick your toes in the sand and water. Feed the seagulls!
Thats all I have for now. Stay strong and god bless you little one!!
Hello Avery, my name is tabatha and I live in Tennessee! I wish we lived closer to each other. I am getting married on April 21, 2012. I would love to have you as my flower girl! You are such a beautiful little girl, and I know you are going to touch so many people in your life. I am going to share your story with all of my friends, and hopefully one day doctors will find a cure for sma. You and your family are in my prayers. God bless you all!
Hi Avery - I am sorry to learn of your illness but happy for you to be surrounded by such loving family and friends. Your sweet smile must bring such joy to them each and every day.
I live in Houston too and am a friend of someone who is friends with your mom. I just wanted you to know there are a lot of us who care about you and will share your story with others so maybe one day, SMA will have a cure.
In the meantime, I thought of a couple of things you could add to your bucket list for things to do with your grands. Grands are the best cause they let you do whatever you want !
hugs and prayers to you all...AND I AM FORWARDING YOUR INFORMATION TO THE ELLEN SHOW...I definitely think you should be on it !!!! Oh, and don't forget to wear your tiara and maybe even a fluffy skirt, I hear Ellen is partial to little girls wearing those.
My fiance and I are getting married June 30th in Austin, Texas....we would feel blessed to have you as one of our flower girls....can I email you???
Little Avery, one of my favorite things to do when I was little was to build a fort out of the living room sofa cushions, and sheets I pulled off of my bed. My best friend and I would "camp out" there all night. My dad would bring us flashlights and make us snacks for the "long" night. I hope you get to do this too, one day. I know your spirit is far brighter than any of us could possibly imagine.
I look forward to reading about your adventures, and I will help join the cause to spread the word about SMA!
Can you email me at melanie@thepaintpub.com to work on scratching a few things off of that list? Thanks!
Sing off tune while Mom and Dad smile and listen closely.
Do that first cartwheel and show the expression of "I DID IT!"
Hide under the covers and giggle, while Mom and Dad "look for you.."
Go on a Date with just Dad.
Play UNO on the floor with Dad.
When Mom is not around and Dad is driving in the neighborhood, stand up and stick your head through the sun roof...shhhh...don't tell anyone.
Make Mom and Dad hang that priceless artwork you made at their work.
Put cookies and milk out for Santa.
-CHECK THIS ONE OFF- Put a smile in a strangers heart and put you in his mind.
I work for the Houston Astros and would like to have you out as my personal guest for a game. Please contact me at rtapia@astros.com. Thanks!
I bet Daddy is going to be excited about this offer!
I live in Williams, AZ. We are a little south of the Grand Canyon which is on your list. Just down the road from me is a Deer Farm & Petting Zoo and a little ways away is a drive thru wildlife park and petting zoo. Williams is a wonderful town to live in with my children and I think a visit would be great for you and your family! We may have a lot of tourists pass through but the residents of this town know how to take care of each other and our guests.
Thanks for sharing your story about Avery and SMA.
I have just learned about you. My heart swells with pride that your mother and father are enjoying every possible moment with you. I'm currently trying to find a location where you can cross off several of your bucket list items. I don't want to ruin the surprise so as soon as I have all the information I need I will let your mommy and daddy know!!
Lots of love goes out to you and your family sweet girl!
Equest is designed for children and adults with physical, mental, and emotional disabilities, and I'm sure they'd be willing to help you out with that one.
A few things I thought of are: 1. Get Baptized 2. Roast marshmellows 3. Cut your own hair when no one is looking 4. Get gum in your hair and have to use peanut butter to get it out. 5. Go to the American Girl store 6. Perform in a dance recital 7. Be in a pageant like all good Southern girls do ;-) 8. Wear a smocked dress (another Southern girl tradition) 9. Adopt an animal from the pound. 10. TAKE UP EVERYONE'S OFFER TO HELP YOU COMPLETE YOUR BUCKET LIST!!!!
Your story has touched my heart deeply. I am a 4th grade teacher in San Antonio, Tx. I would love to have you attend your first day of school at my elementary school and to come see the Alamo! My kids and I would love to meet you and your sweet family. E-mail me at stepharoni21@gmail.com.
You and your family are such an inspiration! I have a few things to add to your bucket list... carve a pumpkin, light up the sky with sparklers on the 4th of July, bake cookies with Mommy, make homemade gingerbread houses, have a picnic, go to the movie theater and eat lots of junk food, go see Shamu, go to the Rodeo, ride a ferris wheel, own your very first pair of cowgirl boots, sleep in your own "big girl bed", go on a hayride and lastly, watch and try to catch fireflies! I wish you much luck on your journey and look forward to reading about your progress and all the fun things you are accomplishing!
Your blog is very inspiring! We live up near Niagara Falls, if there is anything we can do to help you visit the falls let us know! My 9 month old son Collin would love to meet you!
I have free passes to the San Diego zoo for you Avery. They're ready when you are!
I just read your story, and it was very inspiring! I know that it would be a very long trip for you, but if you could ever make it to West Virginia, I would love to help you accomplish some of your goals!
You are so precious!! Your story has been such an inspiration, and it seems as though you and your family are living life to the fullest. I am actually a Texas State University alumni (and yes it was called Southwest when I first started), but I'm currently living in Asia, and your story has reached me out here!
Avery!! Your story has me in tears, and I am taken back by just how much spirit you have!
Dear Avery, I think another great thing for you to do would be to plant a flower with your mommy and daddy. If there is any way I can help, with anything on your bucket list, let me know. Please email me at kmbush84@gmail.com.
How do we contact you if we can help with something on your bucket list?
Play with a puppy as he licks my face. It's the greatest, unconditional love! Try it!
you and your mommy and daddy are so inspiring!!! Your story and peoples comments brought me to tears. Going to share on my Facebook.
I don't know if you've done these or it's been mentioned but here are some things you might want to add to your bucket list.
You can scratch "Know my entire family is loved by someone in New Hampshire" off your list.
We love you Avery - and all those smiling people around you, too. My daughter Brittany has a rare disease called Alexander Disease - and while she is "lucky" to have the juvenile form, which means her progression is slower than children with the infantile form, it still means that this disease will take her from me - eventually.
Your story has touched my heart! I have a daughter named Avery, what a special name and special girl you are!
I have no connections to anyone famous, so I can't promise that you meet Ellen or Oprah but I did go to the Ellen show and email them your story. I hope it touches her heart the way it has mine and she brings you to the show.
I will keep you and your family in my prayers! Stay strong little girl!
God bless you and your family every day. Thank you for sharing your story with us. If you want, you are very welcome to come to Tennessee and graduate from our PreK and our high school to receive your diploma. Your story inspires so many people. My niece Isabella was only with us for 17 days. I am so happy that your family gets to have you as long as they can. Please know that you have a family in Tennessee if you want anything! We can also get you in a kayak and a tube down the river! Love to you and your family.
I found your blog through Facebook and I will definitely be following you and your family as you cross off all of these exciting events! I am a new mother with a 9 month old son named Nash. You have inspired us to get out and live life to the fullest. Thank you for that! I was a Pom girl at the University of Oklahoma (Go Sooners!) and I was also a Thunder Girl for Oklahoma City's NBA Thunder basketball team. If you ever make your way to OKC please let me know and we can make something happen (whether it be attending a game, the girl's rehearsal, an appearance, whatever). Best wishes to you my sweet Avery. You are a true inspiration to us all!
What an amazing family you have! You are such a beautiful baby inside and out and I know your Mommy and Daddy feel so blessed to share your life. My class and I would be so honored to host your first day of Kindergarten. I teach at a private Christian school in San Antonio called the Buckner Fanning Christian School. I also have two sons (7 and 4) who would love to take you on your first date! I wish you infinite blessings and happy days with your family.
My daughter has a g-tube (for a very different reason) and my husband is suffering from muscular distrophy....so I understand some of the doctor stuff. I understand "NFD". But I also understand the life you live in-between doctors and hospitals....and that can be amazing! Live it up girl!
The only thing I think I would add to your bucket list is to get to know God and follow Him here on Earth before you go to His house to stay. Haven your family wrap you in prayers and I believe it will benefit you. We don't all get healing. We don't all get peace and ease....but we can ALL have love, enough love to get us through.
God bless you little Avery! I hope you ROCK this life!! I will share your page on my fb and my blog. Much love to you!
I hope you will have many days filled with smiles, laughter, and fun in your future. You are a beautiful, strong little girl with amazing parents. I will continue to follow your blog and share your story. You are truly an inspiration to live life to its fullest! Thank you for that.
I would love to help with some of your bucket list... So you are officially invited to a POOL PARTY! This Saturday April 21st at 2pm. We live in Webster, TX (Ithink thats not too far from you). And not only can you cross off swimming from your list, you can cross off attending a birthday party too! And maybe you and my son Rylan can dress up nd take pictures of you "getting married". He looks very handsome in a suit and tie. I hope you don't mind that he's a little younger than you. So ask your Mommy and Daddy, and if they say yes, tell them they can reach me at jessicapol621@gmail.com or 713-261-4030.
A friend of mine passed your blog along to me and I couldn't help but post it on my Facebook wall to help your blog go viral. I live in Wisconsin and I know you already have attending a Green Bay Packers game on your bucket list (which the Vikings are waaaaaaay better...I am from Minnesota originally), but if you do get a chance to come visit Wisconsin, you should try to be here when there is snow! :) Then maybe you can add sledding to your list too! And while you are here, you might as well eat some cheese curds too since Wisconsin is famous for their cheese. I warn you though, once you have cheese curds, they will be your new favorite guilty pleasure.
Hi sweet Avery. I really hope u get on the Ellen show. I wrote her an email and hopefully others have too. Your a inspiration and so is your mama and Daddy. Thank you for making me realize that all my little problems are stupid. I hope you get to do every single thing on your bucket list sweetheart!
You are such a beautiful little girl and have the best mommy and daddy god could have picked! I am so thankful I came across your blog and reading about everything you are doing melts and breaks my heart. And you have inspired me to enjoy the littlest moments with my 8 month old daughter Londyn (who would love to meet you!) even when she's spitting carrots in my face lol! I would be HONORED to scratch riding a horse off your bucket list. And it would be Londyn's first ride too! So maybe that's a double cross off? Go horseback riding with a new friend? PLEASE tell your mommy and daddy that I have a beautiful horse that is 'chomping at the bit' to take you on your first ride! Every Texas girl HAS to ride a horse of course ; ) my email is katieg519@yahoo.com I hope to hear from you and your amazing parents and hope I get the privilege to meet you! God bless and every prayer for you! Hope I see you soon!
Look into http://sire-htec.org/ for the horseback riding, they are a great group. I would love to help you on your first ride but do not have the proper equipment for such a young rider.
Hold and pet a furry little kitten...don't forget the pictures!
My Avery Lynn and I are rootin' for ya!
Hi Avery, I hope one day you get cross holding a little sister/brother off your list. I have been so inspired reading your story. You are an incredible little girl and your mommy and daddy are amazing parents. I too am going to write Ellen and make sure she hears all about you. And I'm going to write the Green Bay Packers too. I know that would be number one on my husband's bucket list of things to do with his little girl. God Bless.
Sweet Baby ... also remember to play in the rain; get some wet puppy kisses and visit the zoo animals.
Have you contacted Make a Wish to help with some of the bigger things?
Be serenaded by a men's a capella group.
Avery, please ask your Mommy or Daddy to contact me. I'd like to try to help you with one of your bucket list items. Also, I'd like to see what my team could do to help your foundation be more recognized.
Also, I think that you should add this to your bucket list.
"Meet someone special who was born with a disease and has been courageous in their life." I recommend Reggie Bibbs - http://www.reggiebibbs.com/ He's a good friend of mine and I'm sure he'd love to meet you.
Avery what an amazing little girl you are! I will do my best to help spread your story! To your mommy & daddy I commend you for your strength & determination! I'll pray for strength, peace, & comfort for you all through all life has in store. Have you thought about first bike ride? Maybe first fishing trip, or sleepover? Oh and my 3 yr old says you are such a pretty baby!
Avery- I went on to the Ellen DeGeneres site and submitted an email to the show regarding you. So maybe you can cross that one and meeting someone famous off your list at the same time. Maybe others will see this post and do the same thing to try and help in little ways we can. Be strong!!!!!!
My fiancee and I are getting married on October and we dont have a flower girl but would like to make you an Honorary Flower Girl for the occasion.... It would be awesome.
Your story touched my heart. People will be more aware of SMA because of you. My suggestion for your bucket list: Watch the sunset at the ocean.
I wish you lived closer so I could take you skiing and rock climbing with me. I could also bring you to the hospital to be a doctor for a day since I am sure you see lots of doctors in not so fun ways.
I recommend building a fort in your living room and sleeping in it with mommy and daddy. Your life is a gift, and your suffering will not be worthless.
We will keep working hard for you sweet baby, and all the others with this disease.
-Find a Naval Base (and, preferably, someone IN the Navy) and stand on the top of an aircraft carrier, looking out over the water.
I never thought that those things would be high on my list of things that I loved more than anything, but they are. And, my husband is in the Navy, stationed in Virginia. I also have some friends stationed in San Diego. I think we could help if you chose to do that.
You are such an inspiration and have helped educate myself and others about SMA. I am a graduate from Texas State (just like your mom and dad) and played softball there. I talked with the softball coaches there and they would love to have you come out to throw the first pitch. The game is an evening game on April 24th (I know short notice) against UTSA. Please contact me at leahboatright@materapaper.com. I would love for you to scratch that off your bucket list. I'll keep you and your family in my prayers.
I hope you can do everything on your bucket list and I'd like to add this too it.
- read a good book take an adventure that you won't want to get out of. Enjoy the story and be the character in that book. Get out of this world and into the fantasy of another.
Go to Prom. Your daddy looks like he'd be a fabulous date but I'm sure there are boys who would line up to dance with you.
Your story has touched my heart and brought me to tears. I don't know much that I can do to help - I will post about you on my blog in the hopes that it will bring some traffic to your site and help you reach your goal of spreading awareness. I will be following you, precious, amazing little girl.
I'm from Oregon and would love to help Avery accomplish everything on her list. She is such an adorable little girl. You are a wonderful family and I hope you enjoy every moment with your darling girl and get years of them. Maybe she will be one to beat the odds! I emailed Ellen, so hopefully that helps :) everyone needs to know about SMA.
And I agree with the post above, go to prom. Also, go on a cruise. Visit as many states as possible. And if you're ever in Oregon I'd be happy to show you around :) oh, and go to the top of the space needle.
I may not be famous, but I am a Miss America local title holder in California. My platform is the Muscular Dystrophy Association and am applying to med-school this summer so I can be a pediatric neurologist like McSteamy. If you let me know when you plan to go to San Diego I will do my best to have you meet the current Miss California (she's hosted in San Diego) so you can say you met someone who competed for Miss America! If you wait until after June it might even be me! Sending lots of hugs, prayers, and love your way precious!
I wish all things for little Avery and am sending prayers your way.
With summer around the corner I'd love to add Go to summer camp and play in the ocean to her list.
Your story brought tears to my eyes, not in sadness although I am truly sorry that you are so sick; but because you and your family are living your life and making it into something special something unique. Not many would be able to do what you and your family are doing. For that you all are special. I had a friend growing up who was affected with SMA although he had type two. He almost made it to his high school graduation, you and him dear Avery are a lot alike, his name was Chris, and he was powerful in his own right. He inspired people, even with the challenges he faced everyday he would light up when he was around me, he is the one that taught me how to add and subtract he was my hero and he is part of some of my fondest childhood memories. He was a few years older, my brothers age. When he passed, and his intended graduation year came around the school let him graduate.
It is important to get your story out dear Avery, and I personally am thankful to have read about you and your life, your bucket list, and the fact that despite what you are challenged with you are making it count.
4. Hold a kitten, Name a kitten, listen to a kittens purr.
10. Give your mommy and daddy breakfast in bed the way every child should. cereal bowls spilling over with milk and cheerios, burnt toast covered in jam, dandelions from the backyard, frozen waffles that just didn't get cooked long enough and covered in tons of syrup!
11. finally sweet girl, Make memories, fill everyday with smiles, and remember to tell your mommy and daddy you love them in every way you know how. Smiles, hugs, kisses, words, and laughter.
I will be checking back to see how your list is going sweet Avery, and maybe soon I can help you along with one of your items to do.
We're almost the same age. Ok, you are a few weeks older! You should add "Make my fingerprint into a necklace for Mommy so she can always have me around her neck." My Mommy has one and she really likes it.
Today I sent out something that will help you cross a few things off your bucket list! Check your mail box it should be there in 7-10 days!!
Oh and P.S. You should have a star named after you!! How neat would that be?
Mama and I will be praying for you.
I so hope they are wrong on the 18 months...keep your spirits and hope high...and you never know...and today I found out that those timelines they give you...may not be right!!!
If I lived closer I would do the photoshoot with you...you would look adorable in some of my photography props...another for your bucket list...wear high heels for absolutely no reason!!!
I will think of you often baby girl!
"be princess for a day complete with tiara"
I didn't see anything in there about your career plans so, I would like to offer you your first job. I'd be honoured to have you as my assistant Community Manager with the company I work for. I won't mention the actual company here, because I wouldn't want anyone to think I'm trying to promote us.
You can start right away and your first task will be to gather all the love you can and live all the dreams you can with as many of your loved ones as you can. Please keep me posted on the progress.
And guess what? You've already won employee of the year! If one of your older friends can tweet me @hugeheadca and tell me where to email the certificate, I will email it to you.
Dearest Avery, Your story is so touching and your family is amazing!! I have something you should add to your bucket list, be able to be in 4 states at one time!! When you make it to the grand canyon you should detour our way and visit the four corners monument!!
Go to Disneyland and take smiley pictures with all your favorite Disney characters.
My daughter and I are traveling on an Amtrak train from Fort Worth, Texas to Maricopa, Arizona. (August) We would love to take you along. I didn't see it on your list, but it is always fun to add stuff.
Hi Avery, a few things you definitely should do; baking things with Mommy on a rainy day, drawing on the sidewalk with chalk, and looking up at the clouds and finding animals in them, making s'mores around a campfire, going camping with Mommy and Daddy, and touching the hearts and minds of thousands of people around the world. I've got to say, you've already done the last one. You've taught thousands of people to enjoy the simple things in life. That nothing is guaranteed and we should enjoy the time we have with our loved ones. Thank you, Avery.
I just found your blog today via FB, and I've read through quite a bit of it today. Forgive me if I repeat anyone else's suggetions for your list, but a few things came across my mind and I wanted to share them with you. Here are my ideas: #1. Every little girl should get to go to an American Girl store! I'm not in ANY way affiliated with them, but it's just SO cool to be surrounded by all those dolls and their outfits, and all that 'girly' stuff! You can even pick out a doll that looks like you and get matching outfits! I don't know if you have a store anywhere near where your Mommy and Daddy live, but if you do and you're able to go sometime, let me know - we'd like to get you a gift certificate to help you get your 'look-alike' doll! #2. Bake cookies for Santa and leave them out with a glass of milk and a note for him. I've heard that his reindeer like carrots so you could leave some of those as well for him to give to them. Then you should stay up late and listen to see if you can hear his sleigh bells. The next morning, check and see if he ate your cookies, I think sometimes he even leaves thank-you notes when someone special makes him some extra-yummy ones that he really likes! #3. Watch the movie 'Dirty Dancing" it's every girl's right-of-passage! #4. Take your Mommy and Daddy to a tattoo shop and watch them get tattooes of your feet or hand prints with your name and birthdate in a pretty font with your favorite colors. #5. Lastly, when your Mommy and Daddy don't know you can see, spy on your Daddy slow-dancing with your Mommy to their special song. Watch closely to the sweet way your Daddy holds your Mommy tight and how she looks deep in his eyes with lots of love. Remember what this always, because it will show you what soulmates look like when they find each other. The love you'll see is the love that brought YOU into this world and is the kind of love that you will want to find for yourself when the time is right.
Those are my suggestions for your list. It might sound strange since we've never had the chance to meet, but I want you to know I believe in you! And can you please tell your Mommy and Daddy that I believe in them, too? I'll be following your blog closely to get the chance to see all the amazing things I know you're going to get to experience in your life. I'm so glad I found you and want you to know I'll be spreading the word to help you get your story and your cause out there as much as I can! Thanks for taking the time to read my thoughts!! You go, girlfriend!!!
Tell mom and dad to add "ride on a Harley Davidson" to your bucket list if it's not there already. Im sure the biggest and baddest biker in town would love to give you a ride sweetie. Just look at him with those amazing eyes and give him that smile. He'll understand.
Have that Sweet Sixteen Party and go to Prom....take lots of pictures.
I looked for an email or contact link but couldn't find one. I am a cast member at Disney World. I would like to help your family recognize a few of your dreams. I can't offer much but what I'd like to speak to you about what I can offer. How can I contact you?
Run wildly to shore because the sand is burning ur feet!!
I will keep thinking on some more. Avery you are an inspiration and my little boy Blake and I will pray for you and your family every day. I can't wait to see more items crossed off your list sweet baby.
Sweet precious Avery- You have to see the Circus. You need to have your first ice cream cone and cotton candy. Running barefoot on the beach in the rain. picking flowers for Mommy and Daddy. Seeing your first Rainbow.Singing a song just for Mommy or Daddy. Making foot and hand inprints with mud/clay.
I send my blessings and prayers to you and your family. May God continue to bless each and every day with Avery. Many blessings and Prayers coming your way.
God Bless your family and especially Avery. This is not only an amazing story, but a great thing you are doing for your baby and yourselves. When she is gone, you will have some awesome memories.
I just love reading the blog, and most of all her bucket list. God Bless you all.
I think Avery would love to go to a country fair and eat Cotton Candy and ride a Merry Go Round.I'm a morning person also.
Hi little miss adventure girl. Ok here's my idea... MUD RUN!!! You would love it. You get to slip and slide and generally get MUDDY and nobody get's mad at you for it. Tell your mommy and daddy you think it would make a great family photo as well.. ALSO, while your at it.. make a few MUD PIES.. I used to make em and try to sell em to the neighbors.. complete fail but automatic fun. mucho affection little sister.
I think I can help you with the haunted house! My family and I are ghost hunters!
Dear Avery, I am so touched by how strong you and your family are! After reading your first post I just knew I had to suggest something for your bucket list! I am a mommy to 3 year old twins and one of the things I want to do with them is travel to every State before they are 18. I think you should have this experience as well! I am in the sate of MI and will be sending you a post card from MI that I will leave blank so you can write to Mommy and Daddy about all the cools things in Michigan. And ofcourse you must take home some souveniers too :) I hope all your new friends in other states will help you visit their states as well!
Take care Sweetheart and have fun traveling!
I read your story and I have an offer for you to help with your list. You have written that you would like to walk in a charity event...I am creating a team right now to do just that. I would love to have you as part of our team. The event is in Atlanta and it is for MADD (Mothers Against Drunk Driving) and we have spots for virtual walkers! Have your mommy or daddy email me if you are interested. If you could make the event, I think you would really enjoy it, but if you can't, you are still a member and you can walk through your favorite park with one of your new puppies!
Avery, if you get Crayola Window markers you can draw all over the windows and mirrors! It's not the wall but it's close ;)xoxoxoxo little darling!
I don't know you or your family, but would like to invite you to my college graduation. I live in Wichita, KS and will be graduating with an Early Childhood Education Degree from Butler Community College. I know going to a graduation is on your bucket list. It is on May 12, 2012. If you want more information please email me at lkbworggah@yahoo.com. Thanks! Good luck on completing your bucket list!
Avery, knock that 5K off your list. We are doing better than that. I am running the New Jersey Marathon on May 6th (26.2 miles) with you in my heart and your name on my shirt. We'll cross the finish line together. The marathon is a beach marathon, so you can knock that off your list too. As a mother, your parents are my new heroes.
I have a few ideas for your list.
Take a photo with Mickey at Disneyland.
Visit the SkyDeck in Chicago.
Go swimming in the pool.
Have a surprise birthday party.
Help mommy and daddy cook.
Ride in the driver's seat and take control of the steering wheel.
Kiss someone at New Year's.
I live in Green Bay WI, and I would LOVE to help to get you guys to a Packers game!!!
Avery, You are such a darling! I just wrote on your Facebook page but thought I'd write here too. I'm getting married in June and would love for you to be a flower girl in the wedding. I live way up North in the Upper Peninsula of Michigan but if you came we could cross off so many things on your bucket list. The wedding is on the beach (Lake Superior-largest lake in the world-it's pretty cold even in the summer but you could put your feet in!), there will be horses and a carriage, a bonfire and S'mores, boats, kayaking, and you and your brave mommy & daddy could go camping and count LOTS of stars!
I'll send you an invitation! And I will pray for you and your family. Good luck Sweetpea!
Pat a real live bunny.
Just a suggestion to painting a picture for my Mom & Dad.
Lay her on a piece of paper and trace around her.
We have a friend that took his girls outside (when mom wasn't home) they were painted legs, feet, bottom, back and hair, arms and hands and laid down on a canvas. I was told it is a gorgeous painting.
Let Avery play with the paint on the edge of the picture and you will have a true treasure.
I could help with "ride a horse"- my brother has a ranch near Breckenridge, Texas, and my dad has a ranch in Bartlesville, Oklahoma. Those are several hours from you but are open invitations if you'd like.
For the painting part, I just made one with my 8 month old daughter by putting construction paper in a big ziploc bag. I made big blobs of paint on the paper before sealing the bag. Then I taped the ziploc bag on the floor and let her smush it with her hands. This might be a good way for Avery to paint, too. I cut the edges off the ziploc bag and let the paper and paint dry totally with the plastic still on the top of the painting, then peeled off the plastic. This made a pretty painting, much prettier than the way it looked when I tried to pull the plastic off the wet paint.
feed a giraffe :) I did it and I loved it.
I would offer to help with the photo shoot fun but I'm only an amateur. I do it for fun and hobby.
I am making it a personal mission of mine to help you reach as many goals as possible. I will be praying for you all!
Found you today through yahoo. Have cried reading your posts and looking at your pictures. It breaks me to think of Avery leaving this world and all that is has to offer. Part of me is jealous of you and your ability to spend this time with your daughter, my son died of a brain injury at 3 1/2 days old and took his last labored breaths in my arms. I cannot think of what I would not give to have had the chance that you have now with Avery. Life can be horrible, but it can be beautiful also, thank you for taking the opportunity to help her live each day as if it is her last, and as if it is the most important.
I know a boat ride is on your list. I live in San Francisco with my husband and two little boys (they are handsome and would LOVE you, btw..) Want to come ride the ferry with us and see Alcatraz? Owen and Will's daddy travels a lot so we have lots of miles to get you and your mom and dad here.
Also, thanks for teaching me about SMA. You are making the world a better place through awareness, Avery. That's a big one for your bucket list.
PS Tell mom and dad that I am totally serious about that boat ride!!!
I am so touched by your story!!! But I do have an idea that you can use for mother's day!
Make breakfast in bed for Mommy with Daddy.
I bet she would just love it!
Another idea is dress up like a princess and see a castle.
You should add visiting Philadelphia to Avery's bucket list. I am getting married June 9, 2012 and would be delighted to have her as my flower girl.
Here's hoping you hit 1,000,000 views today (4/28/12)!
Things my little girl loves and has remembered... See the ocean, ride a horse, see the circus, maybe something to do with birthday cards, have a picnic, play airplane with mommy and daddy.
Things my little girl loves and perhaps you should try, Ride a horse, see the circus, swim in the ocean, play air plane with mommy and daddy, play with toy cars and in a sand box, build a sand castle, see Disney on Ice, go to build a bear work shop. Good luck little avery I Hope you get to do every single thing on your list. And God Bless you Little one.
* Cut my own hair, when Mommy's not looking.
* Play in the dirt in my prettiest dress.
* Feed a newborn calf.
* Get into Mommy's makeup.
* Hold a baby chick.
* Go on an Easter egg hunt.
Take one photo in the same spot every day of your life to see how much you grow and change.
If there anything else you need help with let me know, I live in Tennessee. Take care.
Your bucket list is absolutely fantastic! Its got almost anything anybody could ever want to do on there! Since your wee little fingers couldn't possibly have typed all this up, I'd have to say you've got the best, most thoughtful parents in the world. I will hope and pray everyday for you! And I'll keep checking back! You're blog's added to my favorites list!
And in the mean time you can think about adding these to your list. Everyone wants to do it big right? But its also the little silly things that count. Those "YOU JUST HAD TO BE THERE DUDE!' kind of moments. I hope you have alot of those!
Hey, Avery! So, if you come to Austin to see 6th Street, you could also drive not that far north to the ROCK, or Ride on Center for Kids, in Round Rock, Texas and check off "riding a horse". I've never been there before, but they do all sorts of therapeutic riding, I'm told. Here is their website: http://www.rockride.org/ As a lifelong equestrian, I can tell you that there are very few joys like the freedom of riding a horse through the Texas sun.
By the way if you want to come to New York.. you are more than welcome to stay with us!! we can go see the Empire State Building, all the bridges, The Statue of Liberty, Central Park, Coney Island.. all the fun stuff!! and we can take so many pictures!!
This story has really touched me .. as I'm sure it has many people. I come to y'all from winnfield Louisiana ..and I have a 3 month old baby girl . Like y'all I had never heard of SMA. I know now thanks to y'all. I saw something on the bucket list about riding a go kart ..my two brothers race go karts ..I don't know if y'all would be interested but it would he an honor for my family to help scratch one more thing off of the list. Tuggles racing goes back very many years ..not only do my two brothers race go karts here in the south but my cousin races dirt track cars. If this would be something y'all would like to do were here doing our thing on the race track every Saturday and would love for y'all to join. Email me if u want to go fast ;) ... cheriepolk75@Gmail.com.
With much much love smiles and kisses ..
/Tuggles racing team from Louisiana! !!!!
Hearing your story makes me hold my two little ones so much tighter.
I've taken the unguaranteed time I have with my children for granted.
I'm in Las Vegas, Nv and your blog is being featured as the top news story on Yahoo home page right now!
a first trip to Disney Land.
I pray for you and your family Avery. May God Bless and heal you. Here's a couple of things for your bucket list: Watch a BIG fireworks show on the 4th of July. Have a taco party with friends.(no hot sauce)Go parasailing and lastly...catch a fish!
Much love to you and your family baby girl!