X
theAsianparent Logo
theAsianparent Logo
Product GuideSign in
  • Awards
    • Parents' Choice Awards 2023
  • Pregnancy
    • Due date calculator
    • I'm pregnant
    • Trying To Conceive
    • Labour
    • After birth
    • Baby loss
  • Parenting
    • Parent's Guide
    • Relationship & Sex
  • Child
    • Newborn
    • Baby
    • Toddler
    • Pre-Schooler
    • Kid
    • Pre-Teen & Teen
  • Feeding & Nutrition
    • Diseases-Injuries
    • Breastfeeding & Formula
    • Meal Planner
    • Health
    • Allergies & Conditions
    • Vaccinations
  • Education
    • Pre-School
    • Primary School
    • Secondary School
    • Primary School Directory
  • Lifestyle
    • Money
    • Travel & Leisure
    • Fashion
    • Home
    • Fitness
    • Contests & promotions
  • News
    • International
    • Health
    • Celebrity
    • Singapore
  • TAP Recommends
  • Shopping
  • Press Releases
  • Project Sidekicks
  • Community
  • Advertise With Us
  • Contact Us
  • Become A Contributor
  • VIP

Help fulfill Avery’s dying wish

2 May, 2012

Bucket list baby

Baby Averys bucket list

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…

[stextbox id=”grey”]

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

[/stextbox]

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.

Partner Stories
Celebrity Dad Mark Lee Shares the 3 P's of Raising School Going Children - Parenting Tips, PSLE Preparation & Protecting Your Child’s Eyesight!
Celebrity Dad Mark Lee Shares the 3 P's of Raising School Going Children - Parenting Tips, PSLE Preparation & Protecting Your Child’s Eyesight!
NTUC First Campus (NFC) Expands Child Support Model to Include Support for Mental Well-being
NTUC First Campus (NFC) Expands Child Support Model to Include Support for Mental Well-being
Singapore's Dengue Cases Surpass The 35,000 Mark, Highest Since 2013
Singapore's Dengue Cases Surpass The 35,000 Mark, Highest Since 2013
Typhoon Haiyan relief effort
Typhoon Haiyan relief effort

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

Got a parenting concern? Read articles or ask away and get instant answers on our app. Download theAsianparent Community on iOS or Android now!

img
Written by

Felicia Chin

  • Home
  • /
  • News
  • /
  • Help fulfill Avery’s dying wish
Share:
  • An Appeal To Help Save Devdan Who Is Suffering From Type 2 Spinal Muscular Atrophy

    An Appeal To Help Save Devdan Who Is Suffering From Type 2 Spinal Muscular Atrophy

  • Mother honors her stillborn son's memory by donating over 2,000 ounces of breast milk

    Mother honors her stillborn son's memory by donating over 2,000 ounces of breast milk

  • 'Family is Priceless': Malaysian Man in Singapore Rents 2 Buses So He and 60 Other Strangers Can Join Their Families for CNY

    'Family is Priceless': Malaysian Man in Singapore Rents 2 Buses So He and 60 Other Strangers Can Join Their Families for CNY

  • Engaged: Jeffrey Xu Plans Beautiful Marriage Proposal but Felicia Chin Nearly Misses It

    Engaged: Jeffrey Xu Plans Beautiful Marriage Proposal but Felicia Chin Nearly Misses It

  • An Appeal To Help Save Devdan Who Is Suffering From Type 2 Spinal Muscular Atrophy

    An Appeal To Help Save Devdan Who Is Suffering From Type 2 Spinal Muscular Atrophy

  • Mother honors her stillborn son's memory by donating over 2,000 ounces of breast milk

    Mother honors her stillborn son's memory by donating over 2,000 ounces of breast milk

  • 'Family is Priceless': Malaysian Man in Singapore Rents 2 Buses So He and 60 Other Strangers Can Join Their Families for CNY

    'Family is Priceless': Malaysian Man in Singapore Rents 2 Buses So He and 60 Other Strangers Can Join Their Families for CNY

  • Engaged: Jeffrey Xu Plans Beautiful Marriage Proposal but Felicia Chin Nearly Misses It

    Engaged: Jeffrey Xu Plans Beautiful Marriage Proposal but Felicia Chin Nearly Misses It

Get advice on your pregnancy and growing baby. Sign up for our newsletter
  • Pregnancy
    • Baby
    • Education
    • Events
    • Allergies & Conditions
  • Family Occasions
    • Breastfeeding & Formula
    • Child Safety
    • Health
    • Diseases-Injuries
  • Lifestyle
    • Home
    • Money
    • Feeding & Nutrition
    • Diet & Weightloss
  • Normal Delivery
    • Cesarean Delivery
    • Behaviour
    • Secondary School
    • Formula Feeding
  • Ages & Stages
    • Latching & Concerns
    • Festivals & Holidays
    • Education
    • Pre-teen & Teen
  • More
    • TAP Community
    • Advertise With Us
    • Contact Us
    • Become a Contributor


  • Singapore flag Singapore
  • Thailand flag Thailand
  • Indonesia flag Indonesia
  • Philippines flag Philippines
  • Malaysia flag Malaysia
  • Sri-Lanka flag Sri Lanka
  • India flag India
  • Vietnam flag Vietnam
  • Australia flag Australia
  • Japan flag Japan
  • Nigeria flag Nigeria
  • Kenya flag Kenya
© Copyright theAsianparent 2023. All rights reserved
About Us|Team|Privacy Policy|Terms of Use |Sitemap HTML
  • Tools
  • Articles
  • Feed
  • Poll

We use cookies to ensure you get the best experience. Learn MoreOk, Got it

We use cookies to ensure you get the best experience. Learn MoreOk, Got it

theAsianparent heart icon
We’d like to send you notifications for the latest news and lifestyle updates.