Parents draw up 'bucket' list for dying baby daughter
Little Avery Canahuati was born last November in Bellaire, Texas, near Houston, with a genetic disorder that will likely take her life within about 18 months.
Published Monday, April 30, 2012 9:44PM EDT
Being told that your baby daughter likely won't live past the age of two is likely the most devastating news a parent can hear. But rather than spend their daughter's last months grieving, Mike and Laura Canahuati have decided to try to pack in a lifetime of memories into the short time their daughter has left.
Little Avery Canahuati was born last November in Bellaire, Texas, near Houston, with a genetic disorder that will likely take her life within about 18 months. She has Spinal Muscular Atrophy Type One, an incurable disease caused by a genetic defect, which is slowly attacking all her muscles. Already, Avery has lost the ability to move her legs. Her arms and neck will likely be next and then eventually, she will lose the ability to breathe.
One in 6,000 babies is born with one of the four types of SMA. The Canahuatis learned their daughter was one of the unlucky few on Good Friday.
As the couple imagined how they would like to spend their daughter's last months, Mike Canahuati came up with idea of writing a "bucket list" blog for his girl -- a list of things that she, if she could speak, would say that she wants to do before she dies.
The list started with just a few items but has continued to grow, helped in large part by suggestions from the growing list of the blog's readers.
Mike writes the blog as if he were Avery herself, describing her daily health struggles as well as her progress in ticking off the items on her list. The list includes such things:
- Fly a kite
- Play with Play-Doh
- Eat ice cream
- Swing on a swing set
- Race a convertible and feel the wind in my hair
- Have a bad hair day
- Visit where my mommy and daddy first met
Avery's mother, Laura, says the blog helps to keep them focused on enjoying the time they have with their daughter rather than focusing on what's ahead.
"Mike always told me, ‘We have all the time in the world to cry. We can cry when she's not here.' So for now, we want to enjoy the time we do have with her and just make memories," Laura told CNN this week.
Some of the items on the bucket list, like eating ice cream and going to a baseball game, have already been crossed off the list. Some appear as though they may never be, such as: "Be potty trained," "Lose my first tooth," and "Go on my first date."
The biggest item of all on the wish list, though, is: "Overcome my illness." But if she can't do that, she writes, she'd like to "take one last breath, and then take one more before I go to live with my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents."
The blog has already had close to 2 million views in the few weeks since it was created. Her Facebook page too has more than 102,000 Likes. The Canahuatis say they are delighted the blog is getting so much attention because it's helping to raise awareness about SMA, and about the need for research into ways to treat and prevent it.
Avery, too, says on her blog that she's pleased with the attention: "While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA."