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(Facebook)   Farker's friend's son most likely has Spinal Muscular Atrophy, please check the link and read the DIT. Please. Pretty please   (facebook.com) divider line 103
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3625 clicks; posted to Main » on 18 Jan 2013 at 8:53 PM (1 year ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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2013-01-18 01:09:35 PM
His son is about 4 months old, and at 6 weeks they thought something may have been wrong with him, no/low mobility
being the most noticable issue. Fast forward months later, they're seeking a diagnosis through genetic testing and are
awaiting official results, however the doctors have told them that they "aren't looking in any other direction" but
SMA 1. I'm very unfamiliar with the disease, but that stands for "Spinal Muscular Atrophy". While I'm also not a doctor,
and I didn't use Google, I can tell that's some extremely, horrible, painfully serious things when put together in
a disorder.

He was at the baby-Chiropractor and his lung collapsed, and he was rushed to the ER 5 days ago, and it could very well not
end well... he cited a statistic that "90% of children diagnosed die before age 2", and that there was a 1 in 3,000,000
chance of getting it unless the already mutated gene is present. His son will most likely need a trach put it to live..
there have been people telling him to not give up hope, there have been people telling him that it's no way to live and to
let nature take its course... he told this all to me while somehow not completely losing it. In fact, I feel like I was
more visibly shaken because I couldn't imagine being in that position.

He was going on about it "not being a life" and I had mentioned Dr. Hawking to him.. while these conditions are COMPLETELY
SEPARATE from one another, I just kind of drew a comparison between his physical capacity and the capacity of his mind,
and he's clearly still conscious... which apparently there's a single toy at the top of his bed (I think.. that's what I
got from it, anyways), and it's a Stephen Hawking toy from the Simpsons, so he left with some hope for a better today and
tomorrow, which I was certainly glad to see.

There are infinite facets to this situation for him, and I probably shouldn't have even gone that far in explaining them.
Mostly, I'm beating around the bush because I feel strange about this, but in that link up there you can see his picture.
If you have Facebook, PLEASE like the page, and share it with your friends. If you can, PLEASE donate. If you believe in
any sort of God, PLEASE pray. His son, he, his wife, his whole family needs every last little bit of support they can get.
Emotional, spiritual, financial.. all of it. I can't even think of being in that situation, I've been crying since he
turned his back and left my house(man code, nobody can see it), and this is one of the only things I can think of
to do to help him. I've seen community support on Fark before, and I'm really really hoping that something happens here.

Again, please humor me. I'm sure there were run on sentences, rambling, spelling errors, misplaced punctuation marks..
let's come back to that another day. I really just want to do SOMETHING for the family, and I can't think of much
else besides ask for help. :-/

Love,

Witty Comment
 
2013-01-18 01:17:24 PM
Oh God, that should say TFers FRIENDS son. NOT MINE! Can somebody change that for me? I can resubmit? I was just extra hasty in posting I guess. Haven't been on TF/submitted anything in a LONG time.
 
2013-01-18 01:22:41 PM
Here's a link to his official story too, in case you can't find it on the page:

Link
 
2013-01-18 01:27:44 PM

Witty Comment: Can somebody change that for me?


click the notify admins link, lower right of this
 
2013-01-18 01:35:35 PM

alienated: Witty Comment: Can somebody change that for me?

click the notify admins link, lower right of this


Thank you very much. I think the last time I actively TF'ed was before the redesign. It's been a while. ;P

/got over it
 
2013-01-18 01:43:13 PM

Witty Comment: Thank you very much


You're welcome. My bff's son died from Duchenne , so i will hope for the best for your friends kid
 
2013-01-18 04:00:55 PM
Sad to hear. Spinal muscle atrophy is truly a horrific disease and there is very little hope.

Also not to be an asshole but "baby chiropractor" WTF?????

:-/
 
2013-01-18 04:17:50 PM
I think it was a recommendation by a doctor. That's not the kind of thing they would do unless it was suggested by somebody "official". I'm sketchy on that detail,. but I'm pretty sure that's what it amounted to. For all I know it could have been an "Infant Muscular Relaxation Specialist".. who knows.
 
2013-01-18 06:17:25 PM
As someone who cared for a husband with Lou Gherig's they are in my thoughts and prayers. SMA and PMA and ALS are good comparisons (each depending on where the motor neurons are affected most). It's horrific. There is a coach on one of the collegic teams who's son has had it for 20? Years? (Questions marks as it may be 18 and I can't remember which team it is - just saw the story before one of the games). It is truly horrific.
 
2013-01-18 08:04:13 PM
Ugh, that's awful. Sorry for your friends
 
2013-01-18 08:09:46 PM
Puts my AS into perspective.

:/
 
2013-01-18 08:23:41 PM
Sorry to hear that. I'd donate if I had any money.

/in before "socialized medicine" and "power of prayer" snark
 
2013-01-18 08:27:23 PM
Well that sucks.

Nothing worse than bad things happening to kids.  :(
 
2013-01-18 08:31:23 PM
The only thing that can be said is to try to make the child comfortable and pain free as long as they can. Genetics is such a farking crap shoot sometimes.

/Victim of genetics.
 
2013-01-18 08:56:25 PM
Best of luck to the kid.
 
2013-01-18 09:01:04 PM
Wow, I cannot imagine.  So sorry  subby and for your friends.  The grief, the worry, the sadness has to be so intense.  Imagining the baby's suffering and being so helpless.  I assure you they have as many positive thoughts, my version of prayer, and just outright love that I can give them.  And as soon as I am able, I will be absolutely happy to make a donation.  Please update some in TFD.

I am so sorry.
 
2013-01-18 09:05:43 PM
To fund. To first. To read. To soar.
 
2013-01-18 09:06:53 PM
Sending thoughts of love and courage your/their/his way.
 
2013-01-18 09:07:58 PM
You have my condolences, submitter et all.

Look into a DNR. This isn't a condition that will get better at all. It's something that will get progressively worse, and a child who will gradually lose any quality of life he/she has.

I know it sounds horrifically cold, but sometimes, it's better to give them the best, most comfortable life possible, and let them go when their time comes versus heroics.
 
2013-01-18 09:12:02 PM
I hope the kid recovers.

Anyway, didn't that "I'm a Fighter" sign make you just smile a little bit.
 
2013-01-18 09:13:10 PM

Witty Comment:
He was at the baby-Chiropractor and his lung collapsed


Keep babies away from these charlatans. Take them to DOCTORS.
 
2013-01-18 09:13:23 PM

BronyMedic: You have my condolences, submitter et all.

Look into a DNR. This isn't a condition that will get better at all. It's something that will get progressively worse, and a child who will gradually lose any quality of life he/she has.

I know it sounds horrifically cold, but sometimes, it's better to give them the best, most comfortable life possible, and let them go when their time comes versus heroics.


I agree. My dad thinks "no one is better off dead" and insists that, if he's ever brain dead or on a ventilator or anything, we have to keep him alive no matter what the cost.

I'd rather die than suffer through just about anything that won't improve, and anything that puts me in a burn ward.
 
2013-01-18 09:13:41 PM
SMA is a horror. Don't youtube it. Basically, as your muscles no longer get any signals, your body dissolves them, and I'm not exaggerating. Just another reason we should toss money into understanding our own damn bodies.
 
2013-01-18 09:13:48 PM
My condolences.
 
2013-01-18 09:15:41 PM
Alright, I'm going to be *that* guy because I just went through his with a family member. Prayer, although they make you feel good, does absolutely nothing to help someone who needs serious help. Education is key, not religion:

http://www.fsma.org/research/stemcells/

This is exactly the type of thing that can be prevented if we stopped the prayers and let the scientists do their research without them being accused of interfering with God's plan.

Best of luck.
 
2013-01-18 09:18:00 PM
Here's a very good show...

http://www.youtube.com/watch?v=BXOTb4ZxKDI
 
2013-01-18 09:20:55 PM
Well, it looks like I'll be postponing that TF account at least another few months.

Here you go, Connor, and I know it's not a lot, but there's a whole lot of us willing to help.
 
2013-01-18 09:22:10 PM
Maus III: Do you have any idea what the hell you are talking about? This isn't the flu we're talking about. Please watch this.

http://www.youtube.com/watch?v=BXOTb4ZxKDI
 
2013-01-18 09:23:18 PM
Well id love to pray for him as requested, but i dont have any virgins handy to sacrifice.
 
2013-01-18 09:23:36 PM
Just dropped a donation. Behold, the power of FARK.
 
2013-01-18 09:25:08 PM
Um, go to about 28 minutes into the video l linked to for the SMA story. The dystonia part is very interesting as well.
 
2013-01-18 09:27:00 PM

Infinite Monkeys In Front Of A Computer: Alright, I'm going to be *that* guy because I just went through his with a family member. Prayer, although they make you feel good, does absolutely nothing to help someone who needs serious help. Education is key, not religion:

http://www.fsma.org/research/stemcells/

This is exactly the type of thing that can be prevented if we stopped the prayers and let the scientists do their research without them being accused of interfering with God's plan.

Best of luck.


I agree, amen!
 
2013-01-18 09:28:34 PM
It's not that I don't care what your whoever's who is having, I'm not clicking on Facebook.
 
2013-01-18 09:28:55 PM
Facebook = No
 
2013-01-18 09:29:06 PM
Indubitably : I've been lazy, I know.
Here's the video
Here's where the SMA part starts.
 
gja [TotalFark]
2013-01-18 09:31:07 PM
These posts quite literally send me for the whiskey bottle. I can only vaguely imagine my little girl being in this position.
It makes this very tough and strong man weep. And not the little boo-hoo, but the shoulders shaking, face-in-hands, tears-running-down-arms crying.
I try so hard to keep perspective in these matters, but all I can think is "this poor little human has just been dealt the crappiest hand ever, a serious health problem".

I have no words of comfort. I will list in for remote work tomorrow so I can donate. My saturday off is not as important as this.
 
2013-01-18 09:32:00 PM
Witty Comment, they are lucky to have a friend like you, who cares so much and is so empathetic.

Bless you for being who you are for them. The parents need you more than their child does. Listen, hug them, be a quiet strength and someone they can cry with. They will be fine, because they have no choice but to take one day and a time and keep living. Just keep being that friend for them. That's what they need more than anything.
 
2013-01-18 09:32:37 PM
As if the Lame "Comedy" Alt™ posted in this kind of thread.
 
2013-01-18 09:34:02 PM
(This comment has been removed)
 
2013-01-18 09:34:34 PM
Please, PLEASE don't give up hope, tell your friend to stay strong for the little guy, and hey, at least he'll never have to shell out money for soccer equipment. (Or a bike, or a first car...)
 
2013-01-18 09:38:48 PM
Best off luck little man.
 
2013-01-18 09:47:03 PM
Bloody f--king hell. What a nightmare.

Strength and peace to the parents, and peace to the baby.
 
2013-01-18 09:52:45 PM
I just linked on the FB page to this one. All of the kind words and thoughts in the world are welcome.

Thanks for taking a second to check it out. :)
 
2013-01-18 09:54:33 PM
Good luck. Hope things work out for the best.
 
2013-01-18 10:00:12 PM
So sad, but I do not do FB for any reason. I am also a huge believer in letting nature take its course. I just can't see putting anybody through the pain of a seriously debilitating disease just so I can feel better.
 
2013-01-18 10:01:07 PM
How very sad to hear for someone so tiny to go through that. The only suggestion I have is possibly mention Jason Becker's life story. He's had ALS for a very long time now but still manages to communicate and accomplish amazing things. Perhaps that might give a little hope.
 
2013-01-18 10:04:21 PM
I'm a pediatric nurse, and I've cared for babies with SMA1. It really is heartbreaking, and DNR is what I'd suggest. His life could be prolonged with a Gtube and a trach, but it is really such an awful disease. I'm sorry for you and your friend.
 
2013-01-18 10:15:37 PM
I get paid tomorrow. I'll donate what I can.
 
2013-01-18 10:20:23 PM

Aces and Eights: Witty Comment, they are lucky to have a friend like you, who cares so much and is so empathetic.

Bless you for being who you are for them. The parents need you more than their child does. Listen, hug them, be a quiet strength and someone they can cry with. They will be fine, because they have no choice but to take one day and a time and keep living. Just keep being that friend for them. That's what they need more than anything.


If I wasn't on my phone right now I would mark you as a a good person.

And set your display color to #GGGGGG :)
 
2013-01-18 10:20:44 PM
Ugh, why do I do that to myself... Whenever I hear about a kid like this I have to read about the disease... It just makes it worse when you understand what's happening.
 
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