Hello Mamas!
No one knows how to get things done like we do and I have been following the story of the beautiful baby named Avery who has SMA. Her blog (written by her father and with more than 2 million page views) is amazing, heartbreaking and inspiring. As a short synopsis, she most likely does not have long to live, so "she" created a bucket list of things to do and checks something off every day, usually more than one.
*tears*
One of her list items is to continue spreading the word about SMA, for which there is no cure. Just by reading this post, you're helping her achieve her goal! But I also saw that tomorrow, 5/1, she'd like people to try to contact Ellen (I guess that's Ellen DeGeneres) about profiling her on the show to create even greater awareness. I've never seen the show before, but it seems a little thing to do for such a big issue. I think you are supposed to tweet, fb and email the show. (more info on the blog, that i will post below). Who's in?
I know we've had a few moms on here experience the joys of having and the pain of losing a child with SMA. My heart goes out to you.
Also, be sure to check the bucket list for anything you can help with! One of them is to be asked to prom. Anyone have a son that could offer her a date this year? Maybe send a corsage?
Here's some quick SMA facts from the blog:
"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.
Did you know you can ask your doctors to test you and your partner for the SMA carrier gene prior to conceiving children? And did you know that if you both carry the SMA gene you can use alternative fertilization methods to ensure your children will be born without SMA? Or if you prefer, you can still try and conceive a child naturally, in which case you'll be susceptible to the following probabilities:
There's a 1 in 4 chance my new friend will contract SMA; a 2 in 4 chance my new friend will be a carrier of SMA; and a 1 in 4 chance my new friend will not be effected by SMA at all. So based on this, it's probable that a couple who have never been tested for the carrier gene, could unknowingly both be carriers and already have 1 or more healthy friends for me. But if they decide to make me another friend, then they are susceptible to the probability figures above.
Oh and just because you have ZERO family history of SMA or any other muscular disease, that does not mean it's not in your family history."
AVERY PASSED AWAY 4/30. But more SMA families need your help to find a cure and spread awareness.
Here is the blog link for her story:
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You don't have to believe in the bucket list to believe in SMA and to push for testing/awareness, or how even more amazing, a cure.
I appreciate the concerns about exploiting Avery or panhandling for presents/experiences, but in my opinion (not knowing these people at all!) I feel like they simply had dreams for their daughter - some big, some small - for her to achieve and experience in life, a long life. Now all of that must be condensed into a year, maybe more, maybe less.
Think of everything you hope for you children, how you imagine their futures, how you remark(ed) on their milestones and how much we may take for granted. Seriously, "wrap my arms around daddy" was an item on the list. SMA will rob her of this chance soon, perhaps before she really is able to grasp and hug tightly. To cross this off the list is wonderful.
I look at my son and think, someday he will do XX - like go to kindergarten, drive a car, go down a water slide, put a frog in his pocket, tell me he hates me, tell me (again!) he loves me, run the bases, take algebra, pour his own orange juice, ask someone on a date, get a job, trash the house, write a book report, reach the light in the kitchen, maybe have his own family. I just assume he will have time to do this and I will be there to share it with him. It's a hopeful assumption, one that Avery's parents already know is not guaranteed. They will always have their memories, but their time seems more finite to make them. I wish them luck on the list and am inspired by how they choose to help Avery live life to its fullest while she still can.
Can someone explain to me how exploiting your dying child is a stage of grief?
Rhetorical question I guess because there's no way I'll ever understand it.
You know what? These parents are literally dealing with the most horrifying thing possible...if this blog helped them deal with this unimaginable situation, then so be it. I would not even care if they were exploiting the situation...they are still raising awareness about a awful disease. I would not wish this on anyone...
Thanks for sharing. Baby Avery has some really great parents. What a lucky little girl.
Sweet baby girl, this is just heartbreaking .....................
I am sorry but the bucket list is just too much
I have read the blog a few times.
I think its great that they are being creative on how to spread the word of something even after 5 kids I have never heard of.
I don't think they are exploiting thier child or doing it for the money. The money they are recieving is going for medical bills and into a research fund for all children.. the bucket list if you read the blog most are simple things.. I woke up smiling this morning, I got to spend time with mommy/ daddy/ family... I woke up with a bad case of bed head.. then there is the serious ones.. I got to ride in an ambulance and met some great people.
More importantly they are spreading the word to help save some other family even though they know the out come of what's going to happen to thier family.
I think it's wonderful that they've managed to make such a short life as full as possible. In her 5 and a half months she has been more of an inspiration than most people ever are. My baby shares a birthday and a middle name with Avery. I can't even begin to imagine the hell that must be. When I saw sitting up on that list it made me cry even harder.
