Even in her final moments Avery Canahuati was smiling.
Keeping a smile on her face despite suffering from a genetic disorder was one of many things she achieved in just five months of life, inspiring people around the world.
Texas couple Laura and Michael Canahuati compiled a “bucket list” for their daughter, who was born in November and diagnosed last month with spinal muscular atrophy (SMA) type one, after finding out she had months to live.
The list was posted on a blog and a Facebook page and her story went viral, attracting widespread media attention and millions of readers.
Her bucket list included things like going to her first baseball game, waking up smiling, eating a cupcake and wearing a giant bow.
During the project to raise awareness about SMA, which was started only four weeks ago, she even received a card from President Barack Obama, along with a picture of the first family.
Mr Canahuati updated the blog overnight, saying Avery died on Monday afternoon, local time, after 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,” he wrote.
“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.”
He also posted a photograph of Avery which he said was taken about 20 minutes before she fell ill.
“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’.”
Mr Canahuati also wrote the final items on the bucket list, including “not let SMA take my smile away”.
The blog was written in Avery’s voice and encouraged followers to donate to SMA research in a bid to reach at least $US1 million.
Two weeks ago the couple told their story to KHOU-TV, with Mrs Canahuati describing the moment Avery’s legs went limp.
“I just started screaming and it just doesn’t seem real,” she said.
“Mike always told me we’ve got all the time in the world to cry. We could cry when she’s no longer here.
“For now we want to enjoy the time we do have with her and make memories with her.”
Mr Canahuati said: “We could 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.”
It is believed SMA happens in one in 6000 to one in 20,000 births and there is no known cure.