Thread Rating:
  • 0 Vote(s) - 0 Average
  • 1
  • 2
  • 3
  • 4
  • 5
Bumpy roads ahead, found out my son has some serious health issues
06-10-2014, 10:29 AM,
#1
Bumpy roads ahead, found out my son has some serious health issues
I've been a little MIA lately here. As some may know, my 1st child, Jackson Connor was born in February. He's been a good baby. Smiles and try's to talk with his coos and other funny baby noises. Growing normal and healthy. Healthy as any normal infant, though we soon noticed that while he still moves here and there, he didn't move his arms and legs as much as when he was first born. Doctors were concerned and we did some tests. Some genetic, basic screening stuff. We soon found out that he has SMA Type 1.
Anyone ever heard of it? Let me tell you, don't look it up on the internet like I did. It took the wind out of me. For starters, it's the leading genetic cause of death in children under 2. SMA is Spinal Muscular Atrophy. A genetic disease that affects the muscles near the spine, more seriously though the muscles that control breathing and eating. As the disease progresses it usually is a cold, or pneumonia that does them in being that without the muscle tone, the baby can't cough anything out. Or sometimes they can't eat because they can no longer swallow. It's a horrible, absolutely devastating ordeal for any child or parent to go through. I'm surprised no one I know has heard of it. 1 in 40 are carriers of the genetic mutation.
Jackson has been doing physical therapies to get him some muscle tone and he has improved every week, moving more and more. He eats just fine on his own right now, and he breathes ok too, although it could be better at times. We have a positive view of this moving forward, were on our way to the Families of SMA Conference in DC tomorrow. They do this huge conference for families and all the researchers looking for ways to help manage or even cure the disease. Right now there is no treatment or cure but some things in the pipeline from the research I've been doing.
We'll stay positive and keep him happy and as healthy as we can. We can only hope some major solution comes soon, otherwise we fear the worst.
Day by day, hour by hour. It's in the back of our minds, it sucks.
Just wanted to fill some of you guys in, send some prayers and positive vibes Jackson's way. He needs it.
My dad set up a Facebook sight but I don't have the address, I'll post it later. If anyone wants to see more details. He's doing a fundraiser for us on Giveforward.com that's been a huge help. It's awesome to see friends, family and even complete strangers lending a helping hand, supporting us through all of this. If you so choose you can send a hug or donate to help with Jackson's care, see some photos and more info here: https://www.giveforward.com/fundraiser/mzr4/baby-jackson-s-journey
Please support if you can also FSMA.org as well, those people sent us a bunch of real helpful information and toys for him and let us come to the Conference for free. They help so many other families deal with this disease as well.
"Listen to everyone, read everything, believe nothing unless you can prove it in your own research"
~William Cooper

DTTNWO!
Reply
06-10-2014, 07:12 PM,
#2
RE: Bumpy roads ahead, found out my son has some serious health issues
Our hearts go out to you silva. What a terribly scary thing to be going through... Icon_sad I hope so badly that he continues to improve.

ConCen loves you baby Jackson…

Here's the link to the Facebook page that Silva's dad is running.
https://www.facebook.com/jacksonconnorsilva
Reply
06-10-2014, 09:28 PM,
#3
RE: Bumpy roads ahead, found out my son has some serious health issues
We are keeping your family and Lil' Ass Kicker in our thoughts are are sending good energy your way, Silva. Love005
“Today’s scientists have substituted mathematics for experiments, and they wander off through equation after
equation, and eventually build a structure which has no relation to reality. ” -Nikola Tesla

"When the power of love overcomes the love of power the world will know peace." -Jimi Hendrix
Reply
06-11-2014, 04:23 AM,
#4
RE: Bumpy roads ahead, found out my son has some serious health issues
Thanks guys, all the positive energy is helpful. Thanks for posting that link April. I couldn't find it when I did a search for it and I'm not on Facebook so navigating it is a bit of nuisance, so thanks again.
"Listen to everyone, read everything, believe nothing unless you can prove it in your own research"
~William Cooper

DTTNWO!
Reply
06-11-2014, 04:27 AM,
#5
RE: Bumpy roads ahead, found out my son has some serious health issues
My thoughts are with you man.
Reply
06-19-2014, 05:37 AM,
#6
RE: Bumpy roads ahead, found out my son has some serious health issues
Just checked out your links and I must say. OMG he is SOooo cute, quite the little charmer!
I'll bet that he brings you more blessings than you could ever imagine.
Reply


Possibly Related Threads...
Thread Author Replies Views Last Post
  I am back at least for today lol, found something cool Weyland 1 493 02-21-2013, 04:00 PM
Last Post: thokling
  Issues with my wife junebug0000 14 2,735 06-19-2011, 09:38 PM
Last Post: IanPotter
Information I found a very interesting forum joeblow 3 953 08-24-2010, 10:43 AM
Last Post: mastermg
  I am so proud of myself I finally found something worthy to post on CONCEN . Weyland 1 751 07-05-2010, 04:54 PM
Last Post: NickHedge
  Mental Health Issues? yeti 7 1,206 05-08-2010, 10:31 AM
Last Post: Hans Olo
  Strange website I found A New Identity, Inc. Weyland 3 2,019 02-24-2010, 09:48 AM
Last Post: Weyland
  finally I found a good Jack White song! Weyland 0 455 12-22-2009, 09:58 AM
Last Post: Weyland
  Just found this Weyland 5 866 10-24-2009, 10:55 PM
Last Post: Justinfinity
  WORLD LARGEST SNAKE FOUND DEAD! joeblow 11 1,813 10-06-2009, 10:59 PM
Last Post: kevlar
  Census worker found hanged with ‘fed’ scrawled on body April 9 1,349 09-26-2009, 08:53 AM
Last Post: seatis4flotation

Forum Jump:


Users browsing this thread: 1 Guest(s)