Help fulfill Avery’s dying wish

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Mike and Laura Canahuati have been treasuring every moment with their 6-month-old daughter, Avery, who’s terminally ill with an incurable genetic disease. They started a blog with a ‘bucket list’ of what needs to be done before she passes on. Can you help her with her last?

src=https://sg admin.theasianparent.com/wp content/uploads/sites/12/2012/05/bucket24.png Help fulfill Avery’s dying wish

src=https://sg admin.theasianparent.com/wp content/uploads/sites/12/2012/05/bucket.png Help fulfill Avery’s dying wish

Read baby Avery’s bucket list

Mike and Laura started a blog when they found out about Avery’s condition. Laura Canahuati said in an interview: “We had several days of sitting in shock and crying and then we pulled ourselves out of that. Since we had such a short time, we knew we wanted to make the best of it.”

Avery breathed her last…

Baby Avery may have lost the fight but we want her legacy to live on. Here’s an excerpt from the blog and also Avery’s final letter:

“Hello everyone this is Avery’s father.  Avery passed away yesterday [April 30] sometime around 3pm due to pulmonary complications related to SMA.  In short, one of her lungs collapsed and she went into cardiac arrest…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…

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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

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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.

Avery’s final wish

Avery’s dad added:

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.

Spinal Muscular Atrophy (SMA)

What happens when a baby is diagnosed with SMA? According to PubMed Heath, “Spinal muscular atrophy is a group of inherited diseases that cause muscle damage and weakness, which get worse over time and eventually lead to death.” In the case of Avery, she lost the ability to move her body parts—her legs, arms and head. This would eventually result in death when air can’t reach her lungs.

Statistics show that 1 out of 6,000 babies is afflicted with one of the four different types—Type Zero being the worst. Symptoms in an infant include difficulty in breathing (resulting in lack of oxygen), difficulty in breathing (food may travel to the windpipe instead of the stomach, minimum movement, inability to control the head and progressive weakness.

RIP baby Avery, we hope more people will be aware of SMA and it’s consequenses. Leave your condolence notes below…

Source: Read Avery’s blog; all images are taken from Avery’s blog