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(WPTV)   A couple creates a simple, beautiful bucket list for their six-month-old baby dying of Spinal Muscular Atrophy   (wptv.com) divider line 93
    More: Sappy, Laura Canahuati, Texas, bellaire, Easter Week, Good Friday  
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10962 clicks; posted to Main » on 30 Apr 2012 at 11:58 AM (2 years ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



93 Comments   (+0 »)
   
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2012-04-30 11:57:59 AM
Who kicked up all this dust?!?
 
2012-04-30 12:07:20 PM
holy crap that's sad

/father of 2 year old and 6 week old
 
2012-04-30 12:07:32 PM
My allergies are really bad today...
 
2012-04-30 12:09:29 PM
9. Play a practical joke on someone

maybe she's not really dying.
 
2012-04-30 12:10:08 PM
My lawn has pollen today.
 
2012-04-30 12:10:25 PM
taste/smell 1000-thread count pillowcase?
 
2012-04-30 12:10:38 PM
There's no way I'm clicking this link :/
 
2012-04-30 12:11:54 PM

sabatoa: There's no way I'm clicking this link :/


it's so sad, you can feel all your joy and future potential for happiness drain from your eyes as those emotions are excreted from your tear ducts.
 
2012-04-30 12:12:06 PM
That just about broke me for today. I couldn't imagine what it would be like knowing your child is going to die young. It would pretty much destroy me.
 
2012-04-30 12:13:09 PM
I .... have to be honest .... isn't No.3 pretty much a given?

/sorry
 
2012-04-30 12:13:41 PM
I think I cried so much I dehydrated myself.

/mom of a 5-year-old
//considering leaving work to go give her a hug
 
2012-04-30 12:16:09 PM
Scared to click on this one.
 
2012-04-30 12:16:31 PM
Well damn, sometimes being stillborn is better; by that, I mean less painful for the child.

Here's what wiki says about the symptoms: Areflexia, particularly in extremities
Marked hypotonia in legs, arms, rib, chest, and bulbar (facial) muscles, limpness or a tendency to flop
Difficulty achieving developmental milestones, difficulty sitting/standing/walking
Adopting of a frog-leg position when sitting (hips abducted and knees flexed)
Respiratory distress, weak cough/cry
Bell-shaped torso (caused by using only abdominal muscles for respiration)
Difficulty sucking or swallowing, poor feeding
Fasciculations (twitching) of the tongue
Arthrogryposis (multiple congenital contractures)

It just gets worse from there; it sounds absolutely horrifying
 
2012-04-30 12:18:53 PM

TheSwizz: Scared to click on this one.


Number six. Dammit.
 
2012-04-30 12:20:08 PM
Eh. It's not like the kid at that age will remember any of it.

(yes, i'm going to hell)
 
2012-04-30 12:20:11 PM
5. Meet a fan ??

Wait, what?
 
2012-04-30 12:21:42 PM
A death sentence in the womb... And we endlessly squabble over Roe v. Wade.

/the pain would be unbearable, regardless of the decision.
 
2012-04-30 12:22:09 PM
sad stuff right there.
 
2012-04-30 12:22:18 PM

MindStalker: 5. Meet a fan ??

Wait, what?


Of the bucket list, perhaps? That may have been one they added after the website started picking up hits.
 
Skr
2012-04-30 12:26:14 PM
FTA: "5. Meet a fan"
I've heard of the shiat hitting the fan, but throwing your dying baby into a fan is just wrong.
 
2012-04-30 12:27:54 PM

Satanic_Hamster: Eh. It's not like the kid at that age will remember any of it.

(yes, i'm going to hell)


I'll hold your coat. It seems to me this "bucket list" is really just one item:

Sell my Tragic Story so Mom and Dad can get Global Sympathy.



This is an attention whore ploy by the parents. Sure, I sympathize. I have two kids and I hate the thought of them in any distress, let alone living with a Guaranteed to Die in N Years condition. But making list of things the kid won't even be aware of, let alone remember? Up to age 2 all a kid knows is "is my belly full/sleep/is my ass on fire from diaper-rash/I think I recognize that face that makes food for me".

I find it revolting.
 
2012-04-30 12:28:23 PM
This is sad indeed.

At first (this being FARK), I thought the bucket list would be something like

*Take our baby (and parents) to Europe
*Start an endowment for our family in the name of our baby
*Donate money to our baby (and parents)

Glad to see this wasn't the case.
 
2012-04-30 12:30:30 PM
Is the final item on the list being displayed in the living room on a piano?
 
2012-04-30 12:32:19 PM
All I can say is good luck to them, and that they go get some wonderful times with their child, as I can honestly say that I understand them but on a different level.

My daughter is severely autistic (almost 20 but is the equivalent of a 1.5 year old baby in most ways), and there's so many things that she will never get to enjoy due to this. While we do our best for her, she's also got the family held as hostages as we've not been able to do anything together outside the house for many years as she cannot be around other people and gets disoriented (hence agitated and violent) in unfamiliar places. We have absolutely no support.

So how do I understand these people?... in the sense that she is simply living day by day, but only to die without more than the life we can give her. She loves her music, plays with her toys, but cares mostly about food thanks to a doctor that screwed her up with medicine causing her to develop irrational hunger, (the medicine was supposed to help control her aggressiveness that became very bad) , so she's now overweight and controlling her food intake is quite a challenge as she can't lose the weight even if she is no longer on that medication, the "addiction" stayed.

I love her with all my heart, as she is a pleasure to have around (aside the tantrums), but I have admitted freely that I fear for her and the others (my wife and the other kids) that if something was to happen to me, that they'd be the others stuck looking after her, so even if it kills me to say it, I hope that her passing will be before mine, so that I can ensure to be there for her and the others.

I so wish that she'd be able to recover, a miracle cure would be found, but the reality is what it is. We do everything to ensure that her life, limited as it is, is as happy as we can make it.
 
2012-04-30 12:33:31 PM
10. Learn to appreciate the piano.

i303.photobucket.com
 
2012-04-30 12:34:28 PM
This is the saddest farking thing ever. fark you fark, you just ruined my afternoon.
 
2012-04-30 12:34:52 PM
Damn dust......now I just want to go home and hug my kids.....
 
2012-04-30 12:35:52 PM
AngryJailhouseFistfark: I'll hold your coat. It seems to me this "bucket list" is really just one item:


Sell my Tragic Story so Mom and Dad can get Global Sympathy.



This is an attention whore ploy by the parents. Sure, I sympathize. I have two kids and I hate the thought of them in any distress, let alone living with a Guaranteed to Die in N Years condition. But making list of things the kid won't even be aware of, let alone remember? Up to age 2 all a kid knows is "is my belly full/sleep/is my ass on fire from diaper-rash/I think I recognize that face that makes food for me".

I find it revolting.


Dude, their kid's dying. If this is what helps them cope, they can do it. Of course, you can also find it revolting and not buy in to it...but seriously, these are two people facing the slow and painful death of their loved and wanted child, and probably their family, as most marriages don't survive the death of a child.

If my daughter died, I'm not sure I could come up with such a healthy way to cope.
 
2012-04-30 12:36:34 PM
Why did I settle in what is clearly the dustiest room ever?

/devastated
 
2012-04-30 12:36:39 PM

Alonjar: This is the saddest farking thing ever.


Challenge accepted.

My daddy ate my eyes
 
2012-04-30 12:39:37 PM
So, they're getting him one of those Toddlers and Tiaras girls, right?
 
2012-04-30 12:41:28 PM

AngryJailhouseFistfark: This is an attention whore ploy by the parents.


While I understand that you're either trolling or so self-absorbed that the point eludes you, stories like this aren't bout getting attention but about a show of humanity, of struggle, a show of faith against the fact of these terrible diseases, and so provide a little something to help others that might face something similar, or to tell a story that expresses that people should consider themselves lucky when they really have nothing to whine about or feel sorry about themselves.

As my previous post, I have a difficult situation, nothing that we've done can change it, if I have a message it would be to appreciate what you may have.

For me, even with the hardships I live... I don't feel sorry for myself... exhausted at times (btw, there's a lot more in my life than just my daughter when it comes to hardships), but I make the most of it, and I know that there's more hardships that I could have had... in other words, it could always be worse.

If Fark had a "hardship in life contest", I believe that I'd have a good change of being a top contender.

But the reality is: I still consider myself very lucky for the things I do have as despite the bad things, I have a very good life.
 
2012-04-30 12:46:14 PM
What was that about a "merciful God"?

That is one of the saddest things ever.
 
2012-04-30 12:46:54 PM
Jesus. That hit close to home.

My daughter was born with the same condition. She lived nine months. my wife and I held her in our arms as she took her last breath. Ten years later, it still hurts. No parent should ever have to bury their child.

If anyone wants to do something that'll make you feel better about yourself today, could I suggest checking out fsma.org? Good organization, and they do a great deal of work helping families with children who are suffering, and they also do a fair amount of subsidizing research into SMA.
 
2012-04-30 12:46:56 PM
Just curious, is SMA, and severity level of it, something that can be tested for in utero?
 
2012-04-30 12:49:04 PM

AngryJailhouseFistfark: Satanic_Hamster: Eh. It's not like the kid at that age will remember any of it.

(yes, i'm going to hell)

I'll hold your coat. It seems to me this "bucket list" is really just one item:

Sell my Tragic Story so Mom and Dad can get Global Sympathy.


This is an attention whore ploy by the parents. Sure, I sympathize. I have two kids and I hate the thought of them in any distress, let alone living with a Guaranteed to Die in N Years condition. But making list of things the kid won't even be aware of, let alone remember? Up to age 2 all a kid knows is "is my belly full/sleep/is my ass on fire from diaper-rash/I think I recognize that face that makes food for me".

I find it revolting.

In 2006, Mike Canahuati came up with an idea to start a cancer nonprofit group called Insure the Cure because both his parents died of cancer by the time he turned 20.


I find attention whores revolting too. What an asshat. I mean, seriously. His parents die of cancer, and he starts a charity.

Link
 
2012-04-30 12:52:49 PM

Cymbal: Just curious, is SMA, and severity level of it, something that can be tested for in utero?


It's actually the number one genetic cause of infant deaths.

Parents can be tested to see if they are carriers for the disease.If you are a carrier (many people are) and so is your spouse, then your child has a 1 in 4 chance of developing SMA. There are also natal genetic scans (which my wife and I had done when she was accidental pregnant with my son)

There's a wide spectrum of types of SMA. Some don't manifest until adolescence.

It's worth reading up on. It's amazing how little knowledge there is of it.
 
2012-04-30 12:53:25 PM
LEO's are waiting for her parents to document her "first time".
 
2012-04-30 12:57:33 PM

jst3p: Alonjar: This is the saddest farking thing ever.

Challenge accepted.

My daddy ate my eyes


Thankfully, the child got some of his vision back. I hope he's doing better today.

Link
 
2012-04-30 12:57:41 PM
oh jeez... wanna come home and hug the boy right now
 
2012-04-30 01:00:25 PM

gbob23: Cymbal: Just curious, is SMA, and severity level of it, something that can be tested for in utero?

It's actually the number one genetic cause of infant deaths.

Parents can be tested to see if they are carriers for the disease.If you are a carrier (many people are) and so is your spouse, then your child has a 1 in 4 chance of developing SMA. There are also natal genetic scans (which my wife and I had done when she was accidental pregnant with my son)

There's a wide spectrum of types of SMA. Some don't manifest until adolescence.

It's worth reading up on. It's amazing how little knowledge there is of it.


So that makes me even more curious. If there are natal genetic scans available for this, then the scan was either inconclusive or not administered/disregarded?

Really hope it's the former.
 
2012-04-30 01:00:50 PM

AngryJailhouseFistfark: Satanic_Hamster: Eh. It's not like the kid at that age will remember any of it.

(yes, i'm going to hell)

I'll hold your coat. It seems to me this "bucket list" is really just one item:

Sell my Tragic Story so Mom and Dad can get Global Sympathy.


This is an attention whore ploy by the parents. Sure, I sympathize. I have two kids and I hate the thought of them in any distress, let alone living with a Guaranteed to Die in N Years condition. But making list of things the kid won't even be aware of, let alone remember? Up to age 2 all a kid knows is "is my belly full/sleep/is my ass on fire from diaper-rash/I think I recognize that face that makes food for me".

I find it revolting.


SMA is relatively common but most people have never heard of it. It's admirable that they're trying to raise awarenes about SMA and educate people about getting genetic testing so that nobody else has to go through this.
 
2012-04-30 01:01:27 PM

kbronsito: 9. Play a practical joke on someone

maybe she's not really dying.



I'm going to hell for laughing at that one.
 
2012-04-30 01:03:01 PM

Cymbal: Just curious, is SMA, and severity level of it, something that can be tested for in utero?


You and your spouse can get tested to see if you carry the gene for SMA (which one in 40 do). If you both carry the gene, you have a one in four chance of having a child with SMA.
 
2012-04-30 01:03:11 PM
Really sad story, father of 5 month old baby girl here.

I posted this story as well, this headline is better.

Really sad, hoping that she's one of those kids who 20 years later from now was "supposed" to have passed away already.
 
2012-04-30 01:04:44 PM

gbob23: Cymbal: Just curious, is SMA, and severity level of it, something that can be tested for in utero?

It's actually the number one genetic cause of infant deaths.

Parents can be tested to see if they are carriers for the disease.If you are a carrier (many people are) and so is your spouse, then your child has a 1 in 4 chance of developing SMA. There are also natal genetic scans (which my wife and I had done when she was accidental pregnant with my son)

There's a wide spectrum of types of SMA. Some don't manifest until adolescence.

It's worth reading up on. It's amazing how little knowledge there is of it.


Dammit, should have hit refresh before I posted.
 
2012-04-30 01:18:14 PM
Too. Much. Syrup.
 
2012-04-30 01:26:07 PM

jst3p: Alonjar: This is the saddest farking thing ever.

Challenge accepted.

My daddy ate my eyes


That is one of those stories that I occasionally think about and get sick to my stomach and completely full of rage I want to kill the guy myself. Same thing with the woman who was angry at her friend so she roasted the friend's kitten in the oven.
 
2012-04-30 01:26:31 PM
Cut your losses
Drop that bundle
Get Vonage
 
2012-04-30 01:26:38 PM
Since nobody else will say it in the sick baby thread:

I would fark the everloving shiat out of that woman.

abcnews.go.com
3.bp.blogspot.com

1.bp.blogspot.com
1.bp.blogspot.com

/window seat, please
 
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