Brooke & Brielle Make a Grand Entrance at Magic Kingdom Park!

Did you know that each day, two lucky families visiting Magic Kingdom Park randomly are chosen to serve as grand marshals for the afternoon’s Celebrate A Dream Come True Parade?

Grand Marshals in the “Celebrate A Dream Come True” Parade in Disney World.

It was my dream come true. I’ve always wished to give this experience to my children and today was a very special magical day for our whole family! We met our new friend, Mr. Dean at the fire station on Main Street at 2:30pm and there, he greeted us with Mickey Mouse hats/ears with our names embroidered on the back of each and a special certificate to honor our family as the Grand Marshals of the day.

After that, we were led back behind the gated doors to the specially designed car, modeled after a 1912 touring car that serves as the first float in the parade. The car features a few special Disney touches, including Mickey Mouse-shaped silhouettes on the tread of each tire.

Photo Via Disney Parks Blog

We were helped inside the special vehicle and found our seats and magically, Cinderella’s Fairy Godmother appeared at the side of our vehicle to greet us! She gave us a handful of magic sparkles for our journey. Next, we were greeted by Aladdin and his Genie, Ariel and Prince Eric, and MICKEY and MINNIE Mouse! After lots of hugs and kisses by all of them, we were next greeted by Rapunzel and Flynn Ryder! Eugene (Flynn’s real name) showed us Rapunzel’s REAL crown inside his satchel! After a little princess talk with Rapunzel, Brooke and Brielle continued the princess conversation with Belle and the enormous BEAST! The girls were a little scared at first but Belle showed them how sweet and kind the Beast is. That helped them become brave enough to pet his furry paw and arm. Next up for hugs and kisses were Peter Pan, Wendy, Goofy, Tiana and Naveen (The Princess and the Frog), the MAD Hatter, Snow White and the Snow Prince! Then came along Cinderella and Prince Charming with the mice and the evil step sisters! Drizella asked Brielle if they could trade out sisters for a day! Brielle said, “no way!” :) Next they gave lots of hugs to Woody and Jessie the cowgirl, tweedle dee and tweedle dum, the rabbit from Alice and Wonderland, The Queen of Hearts, Mr Smee and Captain Hook, Chip and Dale, Abu the monkey and so many other characters in the parade and even all the dancers!! The girls LOVED all of the special one on one attention and hugs and kisses from everyone. It was absolutely INCREDIBLE! To see our girls SO happy made Eric and I both want to well up with tears. It was one of the best moments of my life, Eric’s life and especially Brooke and Brielle’s life.

After all of that excitement, we heard our names introduced over the loudspeaker as the Grand Marshals of the parade and the doors swept open and away we went, leading the parade down Main Street. It was a good thing I had sunglasses on because “the moment” hit me and there went my happy tears again. Our super awesome friends, Miss Kelly and Mr. Brandon took pictures and videos the WHOLE parade route for us. Miss Kelly was right outside the gates and the first person I saw and she had happy tears just like I did. :) It was such a surreal moment. We all started waving our best Princess waves (except Eric, he just did a normal wave) and I’ll tell you what - Brooke and Brielle kept their arms in the air, waving for the WHOLE parade!! To have SMA and wave your arm for about 45 minutes with no breaks is a BIG DEAL! They were really into it with their slow Princess waves and even blowing kisses to special people in the crowd. I think they won the hearts of many that day. Mr. Dean commented that Brooke and Brielle could give cupid lessons!

Can you see our faces in the middle?

At the end of the parade route, they had a special roped off area for us to watch the parade go past. Each character made a special acknowledgement to B&B as they went past. Eric and I just couldn’t believe it.

Reflecting on our past and all the rough patches we’ve been through as a family. We know what our worst days have been, starting with Eric being deployed for training while Brooke was born, to Brielle’s diagnosis of Spinal Muscular Atrophy (SMA), then Eric being deployed to Afghanistan 5 days after her diagnosis, and then Brooke’s diagnosis a few weeks after that. Suffering through my father’s death, a clinical trial commitment for Brooke and her emergency feeding tube surgery in Utah (you can read all about that here). All while trying to learn the most we can about the diagnosis of SMA. We’ve come a long way but I think Rapunzel said it best… but for the 4 of us - that day in Disney World was the Best.Day.Ever!!

Brooke and Brielle now share something in common with a few famous faces, such as boxing champion Muhammad Ali, comedian Bob Hope and Walt Disney’s nephew, filmmaker Roy E. Disney. They have all served as grand marshals in the “Celebrate A Dream Come True” Parade in Disney World! It is a day that we will never forget!

Thank you Disney World for this very special day. We will cherish it forever!

Our Never Give Up shirts are from the Gwendolyn Strong Foundation merchandise shop.  Get yours here! http://thegsf.org/shop

Aquatic Therapy!

This year Brooke and Brielle started with Aquatic Therapy (swimming).  Our beginning goals for them were to get used to the feeling of being in the water, try to balance their bodies in the water with different types of floats, and lastly to get their faces wet.

They have both exceeded our expectations and it has only been a couple months!  They are both little mermaids in the water and at the end of their session; they never want to get out of the water!!  Their therapist has played with different floats and Brooke and Brielle have even been successful for a short time of swimming with just little arm floats on!!  Incredible.  

The next huge goal they have met is getting their faces wet.  They didn’t like being splashed and it took Brielle longer to try “blowing bubbles” in the water.  Brooke took to it pretty easily and likes to practice in the bathtub.  Brielle on the other hand, didn’t really want much to do with it.  She has her own plan of what she would like to do in the water… like make up dance routines on the stairs.

Once they both got comfortable with getting their faces wet - we did what I thought was the unthinkable and tried to get them to go under water!  *gasp*  To my surprise… they both have done it and keep asking to do it again, and again, and again!  You HAVE to watch these videos.  Once Brielle got the hang of holding her breath, we introduced Disney Princess (of course) goggles so she could see!  WOW, that really struck a chord with her and now we can’t seem to keep her above the water!  One day she got so brave, she wanted to touch the bottom of the pool with her foot.  I decided to let her try and she absolutely loved it!  After perfecting one foot, the other foot, both feet over and over again.  She decided she wanted to try to SIT on the bottom of the pool.  Whoa!  She told me she is now ready for tea parties at the bottom of the pool.  What a big girl!  She is growing up way too fast.  

Meanwhile, Brooke is not quite ready to touch the bottom with her feet!  She is learning actual swim strokes (very basic of course) but none the less swimming!!  She gets really excited about being in the water and I swear she could be in that pool ALL DAY LONG if I let her and she would be perfectly content.  The one thing she needed to work on was keeping her mouth closed.  She would keep her mouth open and get all the water in and try to swallow it and choke.  Yuck!  It’s taken a long time but she has finally mastered closing her mouth and spitting out the water that does get in there.  Yay, Brooke!  :)  The physical therapist puts various types of floaties on and Brooke and swims the entire session around and around and around that pool… all by herself!  I used to be so nervous about her and never, ever let go of her in the water!  Now I feel that she has the confidence to swim all by herself (with the right floaties on of course!).  She is not as confident about going under water like Brielle is so we’re going to give her as much time as she needs.  She really likes to sit on the edge and have mommy “jump” her in so she is really close.  I’m sure Brooke and Brielle will be having underwater tea parties in no time!

Brooke getting comfortable in the water:

Brielle’s first jump in:

Floating on her back:

Brielle touching the bottom on the pool with her foot and her therapist lets go!:  

Local Magazine Cover Model!

Wow, look at this little beauty!!  We are beaming with pride after seeing Brielle on the cover of our local Parent Magazine!  

Brielle’s cover photo is the first of 3 covers featuring Kalamazoo Parent Magazine’s Cover Photo Contest grand prize winners. The photo was taken by Valerie Ott Photography and the yummy looking cupcake was provided by Triplet Moms Treats!

Avery's Bucket List

 

This sweet 6 month old baby, Avery brought national attention to SMA with her bucket list that was created after doctors said she would not live past the age of 2. Sadly, she lost her battle with SMA yesterday. My heart breaks for their family. Not a day goes by where we don’t wish there was a treatment/cure for Brooke and Brielle and all of their friends. 

An anonymous donor was touched by Avery’s story has committed to match all donations made to Sophia’s Cure Foundation in Avery’s name, up to $500,000 for the gene therapy program. 

Please read Avery’s blog, written by her father: http://averycan.blogspot.com/  

This was just posted by Avery’s father today:

TUESDAY, MAY 1, 2012

Avery Lynn Canahuati 11/11/11 - 04/30/12

Hello everyone this is Avery’s father.  Avery passed away yesterday sometime around 3pm due to pulmonary complications related to SMA.  In short, one of her lungs collapsed and she went into cardiac arrest.  I immediately performed CPR on her and was able to bring her back to life, but only for a brief period of time before she passed away shortly after arriving at the hospital.  Avery’s passing this quickly came as a complete shock to all of us, as she had just been given a thumbs up at her last doctors appointment only three days ago. While we were aware of the severity of her diagnosis, we never lost hope for Avery and even in her passing, we still have hope for our daughter and all of her friends.  I’m going to share a note Avery gave me back when all of this started, but made me promise not to open until I knew the time was right…


Dear Mommy & Daddy:
 
If you’re reading this it’s because I’ve gone to take care of my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents.  I love you veeeeeeeeeery much.  Also, tell Nana & G-Pa I love them too.  In fact, tell everyone who loved me that I love them and I appreciate them caring about me.
 
 
When I started writing my blog, I thought I’d only be speaking to my closest friends and family members.  Little did I know soooooooo many people would care about me and while I’m flattered to have so many people who love me, I hope they will also take time to love and care about all of my friends out there with SMA.
 
 
You see, I’d never heard of SMA prior to being diagnosed with it, yet there’s thousands of my friends out there living with it today and millions of my future friends parents who are unknowingly carriers of the SMA gene.  Without awareness and without a cure, I’m afraid more of my friends are at risk to have their lives drastically shortened by SMA.


When people think of me, I hope they’ll also think of all my friends who have been through this and who are going through this now.  But what I really hope for is that when people think about me, they will not waste time sitting there feeling sorry for me, rather I hope they will STAND UP in honor of me and all of my friends (past, present, and future).  And they can do so by spreading awareness and helping to fund a cure for my friends.


To all my SMAns, you followed me, now please follow all of my friends.  


Mommy.  Daddy.  I love you every bit as much as you love me.  And while I’m not here physically, I will forever live in your minds, as you will mine.

Love always,

Avery, Aviator, Aves, Scuttlebutt


Also, before Avery passed away, I made her a promise that I would continue to be an activist in raising SMA awareness, making genetic testing universally available, and in finding a cure for her friends.  I will not break that promise and in the name of SMA awareness and funding a cure, I hope parents of children everywhere will look at Avery’s Bucket List and help her complete items she was unable to.

One of Avery’s newest Bucket List goals was to help raise the remaining $365,000 (out of $1mil) needed to bring Dr. Kaspar’s SMA Gene Therapy program out of the lab and into her SMA friends.  Dr. Kaspar’s SMA Gene Therapy could cure Avery’s friends or at the very least offer advancements towards a cure for them.

Click here to donate to Dr. Kaspar’s SMA Gene Therapy through Sophia’s Cure which is a non-profit organization so all donations are tax deductible.

Once that goal has been achieved, Avery asks that all monetary donations at this time be made in her name to Fight SMA (www.fightsma.org).

Here’s the last picture we ever took of Avery.  It was taken approximately 15-20 minutes before her lung collapsed and she went into cardiac arrest.  She was sitting on her mommy’s lap looking at me and all it took to get her to smile this big was for me to keep saying “Hi”.

SMA, you did not take my smile away!

THANK YOU TO EVERYONE FOR LOVING AVERY, SUPPORTING US, AND HOPEFULLY FOR CONTINUING TO SUPPORT AVERY’S FRIENDS WHO ARE STILL OUT THERE!!!

Items I Can Scratch Off My Bucket List:

1. Not let SMA take my smile away

2. 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).

Up Next:
…I found a few archived blogs that Avery never posted…give me some time and I will share them as well as many stories of other children with SMA (past & present).

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)!  The more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will be a cure for my friends who already have SMA!

http://www.facebook.com/AverysBucketList

https://twitter.com/#!/AveryBucketList

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


Thank you again to everyone!

Posted by Michael Canahuati at 7:04 AM

Therapy, Therapy, Therapy!

Whew, it’s been a long time since I have updated the blog.  We all caught that nasty flu that was going around and it took a very long time to get over but we are finally better and caught back up on our therapy appointments!  We have really been hitting it hard lately but the girls both love every aspect of it and as long as their energy levels can handle it, we’re moving full steam ahead!  Brielle has not been able to take steps like she was doing in the past and has also been complaining of hip pain so we hope to get back to the strength she had at the end of 2011.

Right now, our weekly schedule involves physical therapy sessions at our house or at school through the Early On program, hippotherapy (horse back riding) twice a week, therapy on land every other week and aquatic therapy (swimming) twice a week.  It has been amazing to see how each of the different therapies do different things for the muscles in their little bodies. 

Today B&B had aquatic therapy and I saw something happen that I never thought I would see.  Brielle intentionally “jumped” in the pool from the steps at the deep end and went completely under water!  She has been working for weeks on blowing bubbles and putting her face in the water.  Today she had so much fun “jumping in” that she ended up doing it three more times!  Good thing it was the end of the session because she was very tired but so happy and proud of herself!  She is such a great role model for her little sister.  Brooke is doing so well in the water too but she didn’t want to go all the way under today.  I’ll have a video of her doing it SOON!  :)

Here is my brave little mermaid:

Here she is floating on her back and using her arms to move around the pool!