Saturday, April 28, 2012

PLEASE Help Baby Avery Who Will Pass Away From A Rare Disease...

I found this story about a beautiful little baby girl named Avery. On Good Friday at around 3:30 p.m., Laura and Mike Canahuati of Houston got a call from a neurologist confirming their worst fear. The tests results showed their 5-month-old daughter Avery has a rare and incurable genetic disorder.
Avery was diagnosed with spinal muscular atrophy, a genetic disorder that attacks spinal neurons and progressively debilitates muscle function. Avery's was Type 1, the most severe kind, and doctors told them their little girl had only 18 months to live.

"We had several days of sitting in shock and crying and then we pulled ourselves out of that," Laura said. "Since we had such a short time, we knew we wanted to make the best of it."
To cherish every moment with Avery, the Canahuatis created " Avery's Bucket List," a blog written from Avery's perspective where they chronicle her world and track their family adventures, checking things off from the bucket list as they go.
The bucket list includes milestones in every child's life - from sitting up, kissing her mom and dad, to having a birthday party, meeting Santa Claus, losing a tooth, visiting college and more.

"We have our days, it's not that we don't," said Mike Canahuati, 31, who writes the blog in his daughter's voice. "The blog made it into … 'Let's go to the Canahuatis and smile at Avery and appreciate life instead of crying."
"I have a lot of living to do in just a little bit of time," Avery "writes" on the blog. "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."

Avery's story and bucket list has struck a chord online. Since the Canahuatis started the blog earlier this month, it has racked up close to 500,000 page views, Mike said, with people as far as Malaysia, Hong Kong, Germany and New Zealand visiting it.

"When we saw how many people it was reaching in a few days, that's when we realized we could really get the word out on SMA and spread the word as much as we could," said Laura, who worked as a kindergarten teacher before giving birth to Avery, an 11-11-11 baby.

SMA is the No. 1 genetic killer of children under the age of 2 in the U.S., but most people don't know about it, Laura explained. An estimated one in 40 people are carriers of SMA. If both parents are carriers, like Laura and Mike are, there's a 25 percent chance of their child having SMA.
Laura and Mike urge all parents to talk to their OB GYNs and get tested to see if they are a carrier for SMA.
"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.

Avery has already lost the ability to move her legs. She can barely move her arms and doctors say eventually she will be unable to move her head or breathe without the help of a respirator. Last week, she had a G-Tube put in so she can be fed through a line in her stomach and her parents constantly monitor her oxygen levels since babies with SMA have difficulty regulating their breath.

While her parents know Avery won't be able to fulfill many of the rites of passage that are on the list, they are finding joy in what their baby can do - tasting solid foods, taking a "big girl bath," flying a kite and blowing bubbles - and are finding a way to share in some of the later milestones with her now.
Fast forward a few years, Mike and Laura took Avery on her first college visit to their alma mater at Texas State University, earlier this month. Avery just got her very own (faux) driver's license made - one with an ugly pictures and one with a great picture, hitting two items on her list.

Thanks to some mommy matchmaking, she scored her first kiss from a boy named Cooper "McDreamy," who also has SMA.

"His name is Cooper and he's 19 months old (I just love older men, they're so much more mature than 3 & 4 month olds)," Avery gushes on the blog. "My mommy and daddy said this might be the best kiss since Ryan Gosling & Rachel McAdams in The Notebook."

Tonight, Avery will get to throw out the first pitch at a baseball came for a new minor league team in Houston, the Sugarland Skeeters. Another day, another adventure.

The last thing on the bucket list: to overcome her illness. Laura and Mike know that will not happen since the research is too far off to save Avery, but they hope their daughter's story will raise awareness for the disease and help find a cure.

"No one should have to go through this," Laura said.
Check out here blog here: Avery's Blog 
and her facebook page HERE

Avery's parents Laura and Mike Canahuati are trying so hard to get Ellen to have them on the show so they can spread the word about Avery and her condition. Please write to Ellen and help Avery and her parents spread the word about this rare condition. You can help by writing The Ellen show and swarming her with emails asking her to have Avery and her parents on to spread the word.

Avery's parents are declaring Tuesday, May 1st, to be
"Ellen's Going To Love Me, But Not My Friends" Day.

I think Ellen is the perfect person to help me spread my message about SMA because she's compassionate, funny, and wants to meet inspirational people, which apparently some people think I am.

So here's what they need from you...Please take a moment to write Ellen about Avery.

Feel free to WRITE YOUR OWN

Dear Ellen:

I'm writing about a 5-month old little girl named Avery who has an incurable disease called Spinal Muscular Atrophy (SMA). While SMA is the #1 genetic killer of infants & children under the age of 2, most people have never heard of it, there is no cure for it, and there's minimal clinical research being done to find a cure for it. Avery has created a "bucket list" of things she'd like to accomplish before she dies and one of those things is to be on your show to help spread awareness about SMA to protect future children and their parents/loved ones from SMA.

Since starting her blog 3 weeks ago, she already has over 500,000 page views, has been talked about in online news articles (including MSN, and she's been seen on FOX & CBS news stations throughout the country. Yet her #1 goal on her bucket list remains to be on your show so you can help her teach the world about SMA.

Will you please make time for Avery and help her achieve her #1 bucket list goal?
If you visit Avery's blog or facebook page please let them know that Two Pink Peas sent you to help! Let's all open our hearts for this precious little girl who is trying to spread the word and achieve her bucket wish list!
Big Cricut Hugs To You All!