Our life with SMA - Awareness

Monday, July 30, 2012 at 1:16PM |

Michigan Governor, Rick Snyder, has proclaimed the month of August 2012 as “Spinal Muscular Atrophy Awareness Month!” Thank you State Representative Aric Nesbitt and State Senator Tonya Schuitmaker for your help with this special Proclamation for Brooke, Brielle and all the other SMA families in Michigan!

Monday, July 23, 2012 at 6:41PM |

Sarah

Eric’s dad passed away this morning. Eric was there with him and able to say goodbye. :( The funeral will be in the morning of August 11th.

Obituary

SPENCER – Richard H. Green of Main Street Spencer, MA passed away at his beloved home as was his wish, Monday, July 23, 2012 at the age of 83, after a tough battle with cancer. He was surrounded by his loving family at the time of his passing. Richard was the retired owner of Green’s Flower Shop and a Korean War Veteran.

He is survived by his four step-children: Lorinda Kennedy, Eric Kennedy and wife, Sarah, of Michigan, Troy Kennedy and wife, Heather, of Rhode Island, and Joelyn Durgin and husband, David, of Spencer. He is also survived by 10 grandchildren.

His brother David H. Green of Lincoln, MA passed away in 2011 and a sister Ruth E. Wright (Warren) passed away in 1995. He was born in Worcester, Son of Herbert H. and Florence (Knapp) Green. Richard was great, great, grandson of Josiah Green, pioneer and boot and shoe manufacturer of Spencer.

He graduated from David Prouty High School and the University of Maine where he studied forestry. He was a member of the Spencer Fire Department for 13 years, Chairman of the Ekblaw Chapter Mass Archaeological Society, Member of the Conservation Communion and Spencer Historical Society. He loved the outdoors and the study of nature and history. Richard left a wonderful legacy to the Audubon society. His bequest has helped ensure that the land on Greenville Street will be sustained for the next generation of conservationists. He was also a mason and member of Spencer Lodge A.F.+A.M. and the First Congregational Church of Spencer.

A memorial service will be held on Saturday, August 11, 2010 at 10:00am at the First Congregational Church, 207 Main Street in Spencer. In lieu of flowers, donations can be made in honor of his granddaughters’ medical fund to:

“Friends of Brooke and Brielle”

PO Box 740

Mattawan, MI 49071

Pillsbury Funeral Home, 163 Main St., Spencer is directing arrangements

Monday, June 25, 2012 at 10:59AM |

Sarah

Yesterday, the U.S. House of Representatives unanimously approved the Food and Drug Safety Innovation Act. (Read how the associated PDUFA is poised to impact Congressional support for SMA legislation.)
Today, National Institutes of Health Director Dr. Francis Collins will testify today before the Energy & Commerce Health Subcommittee. Dr. Collins will be discussing the National Institutes of Health work across a broad spectrum of disease research including Spinal Muscular Atrophy (SMA). The hearing is scheduled for 9:30 AM EDT. Click here to stream the live hearing.

Update, 12:25 PM EDT - At today’s House Energy and Commerce Health Subcommittee hearing, NIH Director Dr. Francis Collins talked about NIH’s efforts to expedite the development of treatments for a variety of diseases by increasing its emphasis on translational and clinical research. Congressman Upton is submitting SMA-related questions submitted by our family in conjunction with FightSMA for the Record to be submitted in writing to Dr. Collins by our champions on the committee.
Please pray for positive news!!
Here is a picture of Brielle autographing a copy of her Kalamazoo Parent magazine for Mr. Chairman!

Tuesday, May 1, 2012 at 10:38PM |

Sarah

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!