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  1. #1
    Join Date
    Dec 2013

    Help fight SMA!

    My son Connor is 16 months old. He was diagnosed with a terminal disease called Spinal Muscular Atrophy at 3.5 months of age after being admitted to the hospital for a collapsed lung and bout of pneumonia. We were told he would not survive past 6 months of age. 90% of children with this diagnosis pass by the age of 2, 80% by the age of 1.

    Please help us spread awareness of SMA! WE NEED A CURE!!


  2. #2
    Join Date
    Jul 2008
    awww I am so sorry your going through this.

    As a retired RN I have taken care of several children with SMA. It is such an awful illness. The ones I took care of had a trach and on vents. I was a private duty nurse.

    GOD Bless your family and Connor. {{hugs}}

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  3. #3
    Join Date
    Apr 2013
    SE Michigan
    Connor is absolutely a sweetie, so beautiful. All I can offer is my shoulder and support. What a difficult and courageous battle you are all fighting. May a miracle come soon.

    Please keep us posted.
    "At Websleuths we take pride in being a notch above the rest. " Harmony2, WS
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  4. #4
    Join Date
    Oct 2012
    On the sunny shores of I-65

    I've cared for several kids with the diagnosis.

    Blessings to you and your son.
    Six-year-old Shannon Sherrill disappeared from her front yard in Thorntown, Indiana in October, 1986. Someone knows where she is......


  5. #5
    Join Date
    Dec 2013
    Thank you all <3

    Connor's blog is www.strugglesofansmafamily.blogspot.com

    SMA sucks.


  6. #6
    Join Date
    Jan 2011
    I just read your moving, sensitive blog. I have no words to express how sorry I am and how tragic this is. All I c an say is how lucky your sweet baby is to have you as his protector and mother bear.

    I can relate a little bit to your description of deep depression and asking 'why.' I had four miscarriages many years ago. And that was after surgeries to clear my tubes. And I could not understand WHY I could not carry a child to term. Here I have a wonderful husband, who would be a great father, and we had a nice home and good jobs and a large extended supportive family, waiting for grand babies/nieces/nephews. WHY did my unborn babies keep dying? It took a few painful years to find out the answer, in my mind.

    Because 7 yrs later we had th wonderful opportunity, two times, to adopt wonderful, loving newborn babes. And now I realize that these babies were supposed to be mine. I was destined to be their mom.So all of those painful experiences had a purpose, that was impossible for me to see. And now our kids are grown, and are mazing wonderful young adults. And so I can look back at the pain and loss, 30 yrs ago, and see what it was all about, in the big picture. I hope that sometime, in years to come, there will be peace and heartfelt understanding for you and your family, as to the deeper meaning for this bittersweet period. It may be that you become one of the greatest activists for this awful disease and help spur a needed miracle. But I also see you having a family down the road. And this whole thing will make some sense. I will keep you in my prayers.
    “Every day that they don’t find something is good for me.“ Billie Dunn

  7. #7
    Join Date
    Dec 2013
    Thank you all, we have updated our blog a lot this last week or so, we just had the anniversary of the diagnosis.


    I really want another baby, baby fever! One day, I hope. So hard to imagine with Connor's care.

    Sent from my HUAWEI H881C using Tapatalk

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