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Avery’s Bucket List After Being Diagnosed with Spinal Muscular Atrophy Type 1

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Spinal Muscular Atrophy

Updated Story: Baby Avery Died From Cardiac Arrest on Monday

Mike and Laura Canahuati created a blog about their 18 month old daughter, Avery who was diagnosed with spinal muscular atrophy Type 1, also called Werdnig-Hoffman, a disease that destroys spinal neurons. Avery has already lost the use of her legs and she is beginning to lose control of her arms, and may eventually lose the ability to breathe. Doctors have only given Avery 18 more months to live.

What is spinal muscular atrophy? On Avery’s Bucket List blog it states: SMA is the #1 genetic killer of infants & children under the age of 2, yet most people have never heard of it, most OB/GYN’s do not offer tests for it, and it’s not included when performing genetic pre-screening tests for other potential diseases & disorders. There is currently no cure and it attacks the muscles which causes inefficiency of the major bodily organs – especially of the respiratory system – and eventually leads to death. 1 in 40 people are carriers of the SMA gene. Meaning my mommy and daddy had a 1 in 1600 chance of both having it and even then there was only a 1 in 6400 chance I would get it. SMA attacks muscles and is completely physically debilitating, it does not attack the mind or cognitive skills.Avery's Bucket List

There are four different types of SMA, but Type 1 is the most severe. Infants born with SMA Type 1 are born with very little muscle tone, weak muscles, and feeding and breathing problems. According to the National Library of Medicine, SMA affects 4 out of every 100,000 people and 7.5 million Americans carry the gene that cause SMA. There is no cure for the disease, but the SMA Foundation says, “new therapeutics have entered clinical trials or are approaching trials in the near future.”

Mike Canahuati from Bellaire, Texas, came up with the idea of writing Avery’s Bucket List to make the most of the time she has left. Avery’s parents, Mike and Laura Canahuati said, “We can watch her die, or we can let her live. And through letting her live, we’re going to try and educate other people about this so they don’t have to go through it too.”

Avery’s Bucket List is written by Mike, but in Avery’s voice. On the blog, Avery writes, “Imagine you’ve been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do? My name is Avery Lynn Canahuati, I’m almost 5 months old, and this has become my reality. But before I die, there’s a few things I’d like to accomplish…this is my bucket list and my story.”

What’s on Avery’s Bucket List?

Avery says, “OK everyone, I have a lot of living to do in just a little bit of time and I’m going to need all of the help I can get from my parents and anyone else who wants to help. Keep in mind in everything I do, the two most important things are that I’m spending time with my mommy & daddy, while at the same time spreading awareness for SMA. So with that said, please help me come up with ideas and if possible, help me complete the items on the list and/or share in the experiences with me. Nothing is too crazy and trust me when I say this, if you can dream of it for me, my mommy and daddy will find a way to make it happen. All ideas are welcome and if you can help with any of these please let me know. In no particular order, this is my bucket list:”

I CAN HANDLE THESE MYSELF, BUT WOULD LOVE IF YOU JOIN ME IN COMPLETING THEM:

Wrap my arms around my mommy & daddy
Give my mommy & daddy a big kiss
Swim w/dolphins
Go tubing down a river
Paint a picture for my mommy & daddy
Reach my 5-month birthday
Go on a road trip
Throw a party and invite all my friends & family
Swing on my swingset
Play dress up and wear all the clothes in my closet and have a photo shoot
Play dress up in my mommy’s closet and have a photo shoot
Go swimming
Be a cheerleader
Go to San Diego and visit the Zoo
Attend a birthday party
Attend a sleepover
Stay up past my bedtime watching TV with my mommy & daddy
Sleep in my mommy & daddy’s bed because I was afraid of the boogeyman in my closet
Sit up
Go hiking
Go camping & make smoresAvery's Bucket List
Make cupcakes
Bake with my Tia Kristy
Sit on my daddy’s shoulders
Lounge by the pool reading trash magazines
Get a mani/pedi
Go to a waterpark
Read a book
Have a drink with mommy & daddy
Get a massage
Ride a bicycle
Go roller skating
Be potty trained
Play hide & seek
Have a birthday party
Have as many birthday parties as people want to have with me
Celebrate my real 1st birthday
Go to the movies in my pajamas
Watch the Polar Express
Go kayaking
Make a lemonade stand
Get my drivers license
Drive a car
Go hunting
Go bowling
Make college visits with my mommy & daddy
Learn to type
Go to the beach
Visit my Nana & G-Pa in New Braunfels
Go to a concert
Learn to play an instrument
Sing karaoke
Dance

Go to an Aquarium
Visit where my mommy & daddy first met
Fly a kite

Play poker
Get a present in the mail
Go to work with my mommy
Go to work with my daddy
Go on a boat
Lose my first tooth and get a present from the tooth fairy
Meet Santa Claus
Dress up for Halloween and go trick or treating
Get a tattoo
Have a father daughter dance while watching Father of The Bride
Have a tea party

Have an even BIGGER tea party
Blow bubbles with my mommy and daddy.
Ride in a convertible and feel the wind in my hair
Ride in a Jeep
Race Go Karts
Eat ice cream
Go take pictures in the bluebonnets
Give butterfly and eskimo kisses

I NEED A LOT OF HELP FROM EVERYONE WITH THESE:
Go viral on the internet – I know I’m not singing a song, doing anything funny, saying something politically incorrect, or anything like that, but it would be nice if my story went viral so that SMA has a face.
Be an inspiration to others and then continue to be an inspiration to others
Teach the world about SMA
Help find a cure for SMA so kids like me can use their muscles to walk, talk, hug their loved ones, and live a long lasting healthy life
Go over 100,000 page views
Go over 1,000,000 page views
Go over 10,000,000 page views
Raise $1,000,000 towards a cure for SMA and then do it again and again and again and again
Meet someone famous who will help give me a voice in my fight against SMA so people take an interest
Visit the White House
Be on TV
Be on the radio
Be in the newspaper
Be on the Ellen Show – maybe she can help spread the word.
Meet Oprah – maybe she can help spread the word.
Be on American Idol – maybe they can help spread the word
Have a song recorded that was written about me
Speak in front of Congress

THE LAST THING I WANT TO DO:
Overcome my illness
But if not, then I’d like to 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).

Be sure to check out Avery’s Bucket List blog for the full list.

They would like you to add to list if you can think of Avery’s things to do before you die.  “Our goal for Avery to be the face of SMA. Just like when you say the word cancer, I don’t think there’s a single person who doesn’t know what cancer is, we want it to be the same for SMA,” Laura said.

Photo Credit: Avery’s Bucket List

1 Comment

1 Comment

  1. scallywag

    May 1, 2012 at 11:34 pm

    The irony of this child’s death is how much she was able to give back never mind that she didn’t quite ‘reach’ her bucket list, cause we certainly reached ours. Who knew children could teach us so much about the world and ourselves…

    http://scallywagandvagabond.com/2012/05/averys-bucket-list-paradoxically-fuller-now-that-she-unexpectedly-dies-at-5-months-old/

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Editors' Pick

AMCA Breach: 20 Million Victims, 19 Class Actions

[bctt tweet=”AMCA previously reported that there were only 200,000 victims in the recent breach, but their partner labs said there were more than 20 million.” username=”Z6Mag”]

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AMCA previously reported that there were only 200,000 victims in the recent breach but the company, but their partner labs said there were more than 20 million.
AMCA previously reported that there were only 200,000 victims in the recent breach but the company, but their partner labs said there were more than 20 million. Photo: cbgrfx123 | Flickr | CC BY-SA 2.0

More than 20 million and not 200,000 have fallen victim to a massive data breach that has seen medical clients using the services of healthcare billing company, American Medical Collection Agency (AMCA), to pay for their laboratory tests in different blood testing labs across the U.S. were confirmed by the SEC filings of affected medical institutions amidst the earlier claims of AMCA that there were fewer victims.

The data breach was a result of a cyber attack that aims to phish for financial information from the website of the AMCA. The exposed data belongs to Americans who paid laboratory services at several clinical and blood testing labs and institutions and used the AMCA billing portal.

What happened in the AMCA breach?

Data that were stolen from the victims include their names, phone numbers, dates of birth, home addresses, social security numbers, credit card numbers, and other bank details. The said information was auctioned off by the hacker in several financial hacking forums.

According to DataBreaches.net, the organization who first reported about the incident, AMCA officials, following the notification of the breach confirmed that their system has been compromised and has remained undetected for more than eight months. AMCA corroborated that the breach took place between August 1, 2018, and March 30, 2019.

Notifications have been sent by several of AMCA’s corporate partners and clients to their customers following the disclosure of the security breach that has seen information from millions of Americans compromised.

Related: Hospitals Only Spend 5% Of Its Budget For Cybersecurity Amidst 82% Of Them Reporting To Have Been Attacked

The list of impacted testing laboratories includes Quest Diagnostics (11.9 million patients), LabCorp (7.7 million patients), BioReference Laboratories (Opko Health subsidiary, 422,600 patients), Carecentrix (500,000 patients), and Sunrise Laboratories (undisclosed number of patients).

However, neither the AMCA nor its five clients have yet to notify ALL impacted citizens by the breach making them vulnerable to a lot of cyber crimes and their financial data could be used by anyone who gets hold of the information against the persons of those who still don’t know that their financial information is floating around the internet.

The companies involved in the breach are facing several lawsuits

Appropriately, the lawsuit came into the direction of AMCA, Quest, and LabCorp regarding the incident. More than 11 class-suite actions have been filed against the three companies for their inability to protect consumer data. The 11 lawsuits were recorded at The United States Judicial Panel on Multidistrict Litigation (JPML) on June 3. Since then, eight more lawsuits were filed against the companies in federal courts from New Jersey, New York, and California.

According to litigation experts, “If many cases are filed in federal court, any of the lawyers on any of those cases can file a motion with the JPML [..] to centralize the various federal cases that have been filed by sending all of them to a single judge for coordinated pre-trial proceedings.”

“Healthcare companies are especially susceptible to data breaches not only because they aggregate a tremendous amount of important and sensitive data, but also because they tend to be less focused on cybersecurity protection than other industries,” said John Yanchunis of Morgan and Morgan, one of the firms who filed lawsuits against Quest Diagnostics.

“These companies, like Quest Diagnostics, know they are at an increased risk and yet have not taken the proper steps to protect their patients’ data. We will fight for justice on behalf of those impacted by this breach,” added Yanchunis.

Lawmakers are demanding an explanation

The U.S. government, led by attorneys general from Connecticut and Illinois has also opened an investigation on the matter. Furthermore, lawmakers and other politicians have sent letters to the responding companies to ask for an explanation of why an eight-month data breach remained undetected and to demand accountability from them.

In Washington, US Sen. Mark Warner (D-VA) also sent a letter to Quest Laboratories demanding the company explain its vetting process for selecting AMCA as a billing vendor, and what requirements a third-party vendor has to pass. Democratic New Jersey Sens. Cory Booker and Bob Menendez also sent letters to AMCA, Quest, and LabCorp, seeking official answers on how a breach of this severity went undetected for eight months.

“The months-long leak leaves sensitive personal and financial information vulnerable in the hands of criminal enterprises. Moreover, such breaches force victims to contend with identity theft that may lead to irreparable harm to their credit reports and financial future,” said the letter sent by the NJ senators.

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Arts & Entertainment

‘The Hunger Games’ Is Launching A Prequel And A Possible Movie

[bctt tweet=”Suzanne Collins is releasing a prequel to The Hunger Games storyline and Lionsgate is already looking forward in turning it into a blockbuster movie” username=”Z6Mag”]

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Source: Scholastic

Almost fours years after the last The Hunger Games movie (The Hunger Games: Mockingjay Part II) and almost nine years after the first book from the trilogy was released, Suzanne Collins is returning with the famed trilogy — but this time in a form of a prequel.

Scholastic, the publishing company that distributed Collins’ The Hunger Games trilogy, announced today that it is publishing a prequel novel to the series, currently untitled, which will hit shelves on May 19, 2020.

“Suzanne Collins is a master at combining brilliant storytelling, superb world-building, breathtaking suspense, and social commentary,” Scholastic Trade Publishing President Ellie Berger said in a statement. “We are absolutely thrilled — as both readers and publishers — to introduce the devoted fans of the series and a new audience to an entirely new perspective on this modern classic.”

Collins’ original Hunger Games trilogy—The Hunger GamesCatching Fire, and Mockingjay—altogether, sold more than 100 million copies and has been translated into more than 50 languages. Moreover, The Hunger Games books appeared on the New York Times bestseller list for more than 260 consecutive weeks (more than five straight years).

After writing the last installment in 2010, Collins teased in 2013 that she was working on a new series, but did not say whether it was related to The Hunger Games.

This time, the novel will be set in the world of Panem, 64 years before the events of the original Hunger Games trilogy—the morning where Katniss Everdeen volunteered as a tribute on the 74th Hunger Games. Presumably, Katniss Everdeen played by Jeniffer Lawrence will not be involved in the upcoming novel.

Based on the previous novels in the series, 74 years before the main novels, the 13 Districts of Panem already tried to initiate a rebellion against the Capital. In the aftermath of the failed attempt, 12 Districts remained to leave District 13 to rubbles. The Hunger Games was a result and served as a reminder that all the other Districts should obediently comply with the Capital’s rule.

The novel will take place 10 years after the first rebellion and will tell the story of Panem during the “Dark Days following a failed rebellion in Panem “With this book, I wanted to explore the state of nature, who we are, and what we perceive is required for our survival,” Collins told the Associated Press in the announcement. “The reconstruction period 10 years after the war, commonly referred to as the Dark Days — as the country of Panem struggles back to its feet — provides fertile ground for characters to grapple with these questions and thereby define their views of humanity.”

On other news, the Lionsgate film studio, who adapted The Hunger Games trilogy into movies, is already looking forward to the next addition to Collins’ franchise given that it received praise and public attention for producing them.

“As the proud home of the Hunger Games movies, we can hardly wait for Suzanne’s next book to be published,” said Joe Drake, chairman of the Lionsgate Motion Picture Group, in a recent statement to the Associated Press. “We’ve been communicating with her during the writing process and we look forward to continuing to work closely with her on the movie.”S

Lionsgate turned Collins’ Hunger Games novels into a series of four films, dividing the last novel, Hunger Games: Mockingjay, into a two-part finale. Over the course of the four movies, it earned almost $3 billion dollars an the worldwide box office with the last movie earning $653.4 million.

Collins helped with the movies as an executive producer and a co-screenwriter on the first 2012 movie but distanced herself after she finalized Mockingjay in 2010.

Lionsgate is also known to have produced Twilight, which is one of their platinum franchises along with Collins’ trilogy. The studio earlier licensed The Hunger Games to theme parks and live concert tours being built around the movie franchise.

Additionally, it starred Jenniffer Lawrence who played the main character as Katniss Everdeen in all of the four movies, which helped catapult her acting career in 2012.

Scholastic acquired world English rights to the prequel novel and it will publish in print, digital and audio formats in the US, Canada, the UK and Ireland, Australia, and New Zealand next year. The deal was negotiated by Rosemary Stimola of the Stimola Literary Studio for Suzanne Collins and David Levithan, VP, Publisher, and Editorial Director, for Scholastic.

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Editors' Pick

Global Ice Melting At Rates Faster Than Expected

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Photo by Sergey Kuznetsov on Unsplash

The global ice, or the size and number of glaciers located across cold spots around the world, is a clear indicator of the effects of global warming. With human’s excessive and consistent use of o-zone depleting resources such as fossil fuels — the rate of global ice is melting will only keep accelerating.

The National Snow and Ice Data Center reported that based on data they have gathered since the1900s, glaciers around the globe are shrinking and melting at an alarming rate.

Arctic sea ice has been in constant general low over the years following the increasing trend of greenhouse gas. Additionally, as the frozen ground across the Arctic melts, it releases a massive amount of methane, a potent greenhouse gas. Scientists say that this effect could make global ice melt accelerate even faster.

A separate study found that parts of the Canadian Arctic are experiencing a rate of permafrost thaw six times the long-term average.

Meanwhile, melted ice is especially notable both in and around Greenland — home to the second largest ice sheet on the planet.

“Communities in #Greenland rely on the sea ice for transport, hunting, and fishing. Extreme events, here flooding of the ice by abrupt onset of surface melt call for increased predictive capacity in the Arctic,” Steffen Olsen, a climate researcher at the Danish Meteorological Institute said in a tweet.

Olsen was referring to Greenland losing 2 billion metric tons of ice. “The high melt is unusual so early in the season but not unprecedented,” Greenland Ice said in a tweet.

Experts are calling the lost ice “not normal” considering that it equates to almost half of Greenland. Roughly 45 percent of the ice sheet surface has been melting. Usually, less than 10 percent of the ice sheet surface is melting at this time of year. According to data from the National Snow and Ice Data Center, Wednesday set a daily record for the widest melt area on that date, with 275,000 square miles.

“I’m losing the ability to communicate the magnitude [of change],” Jeremy Mathis, a longtime Arctic researcher and a current board director at the National Academies of Sciences told Mashable. “I’m running out of adjectives to describe the scope of change we’re seeing.”

On other parts of the globe, a city in western Alaska is experiencing drastic changes to its land formations as the state’s ice and permafrost are starting to thaw away.

“Springtime in Alaska isn’t what it used to be. This is the 3rd time past 21 years we can say” warmest spring of record.” 1998 was the warmest to date, exceeded in 2016 and now 2016 exceeded in 2019. Trend +4.0F (+2.2C) since the 1970s.” Rick Thoman said in a tweet.

The continued ice and permafrost melting in Iceland are causing significant damages in terms of requiring towns and villages like Newtok in western Alaska to relocate to avoid dangers.

“It’s a real challenge because in the US there isn’t the precedence to deal with this and there isn’t the political framework to deal with it either,” said Susan Natali, a scientist and Arctic expert at the Woods Hole Research Center in Massachusetts. “The numbers needing relocation will grow, the costs are going up and people’s lives and cultural practices will be impacted.

“Every year there’s a new temperature record, it’s getting worse and worse and you feel like a broken record saying it. This should be the number one urgent conversation happening right now because it’s not just going to be Alaska, it’s going to be other communities all over the US,” Natali added.

The problem does not only persist in Greenland, the Arctic or Alaska. Global ice is melting all across the globe. “The famed snows of Kilimanjaro have melted more than 80 percent since 1912. Glaciers in the Garhwal Himalaya in India are retreating so fast that researchers believe that most central and eastern Himalayan glaciers could virtually disappear by 2035 […] From the Arctic to Peru, from Switzerland to the equatorial glaciers of Man Jaya in Indonesia, massive ice fields, monstrous glaciers, and sea ice are disappearing, fast,” the National Geographic reported.

This week, the Pope has talked to oil executives in the Vatican to find solutions in the growing problem of global warming. He called for a “radical energy transition” from conventional fossil fuels and develop greener energy alternatives.

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