Remembering Avery Lynn Canahuati (11/11/11-04/30/12)

Do you remember your first kiss?
Have you ever thrown the first pitch at a baseball game?
Ever been featured on the news?
Did you ever get a tattoo?
Remember the first thing you built with your daddy?
Receive a letter from the President?
Have you built a fan base numbering in the millions?
Have you ever raised hundreds of thousands of dollars for a cause?

Well I would like to take the time to introduce to you little Avery Lynn Canahuati.  Avery was able to manage all of the above plus many more in just her short 5 months here on earth.

Picture of Avery Lynn Canahuati from her blog http://averycan.blogspot.com

Avery was born Nov. 11, 2011 in Houston, TX to her proud parents Mike and Laura.  Avery was a beautiful baby girl and appeared perfectly healthy.  As with any new parent your mind fills with dreams and aspirations for the future.  As the months passed Laura noticed that Avery was not progressing as well as she should.  After having tests performed Mike and Laura received the call on Apr. 6, 2012 notifying them that their beautiful little daughter in deed had SMA Type I.

Like most of us Laura and Mike had no idea what SMA was at the time.  After the diagnosis and dealing with the short life span their daughter was offered the Canahuati's chose not to sit around and cry for their pending loss.  Instead they created Avery's Bucket List.  Avery was an instant hit.  Everyone who visited the site fell in love with little Avery.  Avery took advantage of every day and tried to keep everyone updated through her blog posts.  Like the day she got her "Glam Tube" http://averycan.blogspot.com/2012/04/aint-nothing-but-g-tuuuuube-baaaaabay.html or the day she threw out the first pitch at the Sugarland Skeeters Game http://averycan.blogspot.com/2012/04/take-me-out-to-ballgame.html .  Through her daddy Mike we were walked through the moments of Avery's life.

Avery Lynn passed away on Apr. 30, 2012 after a lung collapsed sending her into cardiac arrest.  But in her short time on earth little Avery did things that some will not do in their entire life.

This photo was taken just moments before Avery's lung collapsed. SMA never took her smile away.

Avery's parents have done a lot for SMA research and education.  They would like for any donations at this time be sent to the link below to support Dr. Kaspar's research.  Avery's goal was to reach $1,000,000 and she is nearing in on that goal.  Let's help her mark that off the list.

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.

Donations can also be made to http://www.fightsma.org

Be sure to read more about Avery at the links below.
http://averycan.blogspot.com
http://www.facebook.com/AverysBucketList?ref=ts
https://twitter.com/#!/AveryBucketList

Meet Estella (SMASH SMA)

Up until I came across the story of Avery Canahuati I, along with many of you, had no idea what SMA was.  Avery helped educate so many people about this dreaded disease but there are a lot more Avery's out there.  My next several posts will highlight some of Avery's friends both past and present.

Estella Super Star

On Feb 24, 2011 a bright beautiful baby girl named Estella Sweetman-Lopez was brought into the world.  So beautiful and precious her parents, Tom and Maria, had all the aspirations and dreams any parent would have.  Seeing Estella celebrate birthdays, her first day of school, her first boyfriend, high school graduation, and so on.  Estella was a happy

All this changed when at her 8 week checkup Estella was diagnosed with SMA Type I.

From Estella's blog (http://livluna.com/profiles/blogs/estella-and-sma)

"Last year I was massive, I even didn't know for certain if Ryanair would let me fly to see my family for Christmas because It was very obvious I was very pregnant... they not only let me flight then but later on January when I went back home to give birth to Estella three weeks after.

I remember New Year's eve as one of the happiest days that year, so full of promise in the future. We had a party at our flat in Spain, the only night I can be the hostess, and Tom and I bought far too many sweeties, and one year more the vegs where cold, but nobody would tell me because is very bad taste upseting a massive, hormonal pregnant woman. My resolutions were simple, 1. Become the best mum I could possibly be 2. Loose all the weigh I got before the Summer 3. Stop getting bothered about the future.

In February Estella was born, in April we went back to Uk, later that month She was diagnosed with SMA and although I tried to deny the evidence my time with her was running out. In June I had to rush Estella to ICU where we spent the next 2 months... no need to say my second resolution came to nothing thanks to the hospital food. In September we went for a week respite to Bluebell Wood that became two months. In November Estella left, leaving my lap and my heart empty, and she took also my 3rd resolution because ever since all I wonder is how to face a future without her in it."

Estella was a happy child.  Smiling, playing, and watching her favorite tv shows.  She had her toys and stuffed animals just like any other infant.  The only difference is she did not have the muscle control other babies did.  She needed assistance with many of the activities most of us take for granted.  But this never effected her happiness.

Estella and her Giraffe

Estella had her good days and her bad.  Most were spent in hospitals or hospice but she was always a happy baby.  While these children are suffering from a horrible disease they are actually of average or above average intelligence and from the patients I have studied very happy children.  The first thing I notice is there eyes.  There eyes are so full of life and excitement.

Unfortunately on Nov 30th, 2011 Estella left this existence to watch over Tom and Maria from heaven.  While she is not physically here Estella's parents still work to save Estella's friends from the same fate.  I encourage each of you to help keep Estella's legacy alive!

Smiling through it all

Also remember that we are close to the cure but need to raise the remaining funding.  Every dollar counts!

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.

Do not forget to check us out on Facebook and Twitter! 

Visit Us on Facebook!

Follow Us on Twitter!

A Class Organization - Sugarland Skeeters

I would like for each of you to watch the following videos.  The Sugarland Skeeters are a minor league baseball team representing Sugarland, Texas (A Suburb of Houston).  The Skeeters first honored Avery on Friday April 27, 2012, just 3 days before her untimely passing, by letting her throw out the first pitch!  Avery did a great job and the team went on to win that game 10-1.  The Skeeters followed that up with a moment of silence in Avery's honor on May 11, 2012.

Please watch the videos and for those with corporate or organizational influence please help raise support for SMA!

Please 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.
Remember ALL donations up to the first $500,000 will be matched by an anonymous donor and 100% of this money is being used to introduce Dr. Kaspar's treatments into my friends for the first time!

A few faces of SMA!

Later this week I plan to post stories of several SMA patients and victims.  For the time being I found a couple videos on http://www.youtube.com that will grab your heart.

 

Also remember that we are close to the cure but need to raise the remaining funding.  Every dollar counts!

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.

Do not forget to check us out on Facebook and Twitter! 

http://www.facebook.com/TheVioletFoundation

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

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

Who Know's SMA?

While scrolling through the headlines on www.khou.com one afternoon I came across the story of Avery Lynn Canahuati.  Avery was a cute little baby girl born just one day after my daughter Violet Grace.  Possibly even in the same hospital in downtown Houston.  This story really hit home for me especially having a daughter so close in age.

You see at just 4 months Avery was diagnosed with a condition previously unknown to many including her parents.  The prognosis left this sweet little angel with only 18 months of projected life remaining.  Unlike most of us probably would the Canahuati family chose not to sit around and mourn the loss before their child was gone but instead created Avery's Bucket List (http://averycan.blogspot.com) and assisted their daughter in living a fuller life than those many times her age.  

Unfortunately on 04/30/12 the doctors 18 month projection proved to be too optimistic as Avery took her final breaths.  

Avery has become an inspiration to a lot of people.  Right now her blog is nearing 5,000,000 hits in just a month!  Avery has brought SMA into the spotlight but we all need to pull together and keep the momentum alive.

I am not an SMA expert but below are a few facts (Borrowed from The 200 for SMA)

• SMA is the #1 genetic killer of children under the age of 2
• SMA is estimated to occur in nearly 1 out of every 6,000 births.
• 1 in every 40 people, or nearly 10 million Americans, unknowingly carries the gene responsible for SMA.
• SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
• There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders.
• Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years if provided the necessary funding

A few links of interest related to SMA are below

• http://averycan.blogspot.com 
• http://www.facebook.com/AverysBucketList?ref=ts 
• http://www.change.org/petitions/ob-gyn-offices-medical-professionals-any-woman-that-is-plans-to-be-pregnant-make-sma-carrier-screening-standard 
• http://www.the200forsma.com 
• http://www.sophiascure.org 
• http://www.fsma.org 
• http://www.smasupport.com