kandjmom
Registered: 05/10/07
Posts: 1
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Reply with quote | #1 |
Hello everyone -
I'm Kari, the mother of 2 beautiful daughters diagnosed with SMA. Kennedi is 2 1/2 and was diagnosed shortly after her 2nd birthday with SMA type II. Jaycie is almost 5 months and was diagnosed shortly after 3 months. We opted to have the genetic testing done right away for her so we weren't second guessing ourselves. They are unsure what type she will have, but are leaning towards the type II since that's usually the trend. Two SMA diagnosis in less than 6 months is overwhelming and heart breaking  We are learning to deal with this day by day and some days are better than others. I'm looking for some other parents who are in the same position for some support, conversation, guidance and just to lend an ear to each other. Hope to hear from some of you soon .
Kari 
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My wish for you.... |
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kanga1102
Registered: 02/28/07
Posts: 4
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Reply with quote | #2 |
Kari, I am so sorry it has taken me so long to find this posting! I'm Andrea Smith, and I'm a volunteer in the SMA community. One of my primary functions is helping with insurance claims. If you ever have any difficulty getting your insurance to pay for anything that your daughters need, feel free to get in touch any time!
Andrea Smith
864-845-8816
kpax@charter.net |
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alhofosho
Registered: 06/16/09
Posts: 3
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Reply with quote | #3 |
hi! my name is alex. i have sma type two. i am 15 years old. although everyone who has this disease is sad all the time. i never shed a tear. this disease is not bad to me at all! i am living an amazing life. more so then any able-bodied person! the doctors say many things. they told my mom i wouldent live past age 5. there are manyyyyy 50 and 60 year olds and older with sma type two. i dont have any treatments but a good thing to keep in mind for your girls is to STRETCH! physical therapy is key to being comfortable. also everony with sma has to get spine surgury for scolocisis, i deffinelty spelled that wrong. wearing a body-jacket didn't help my curve at all. i got the surgery and was at the movies with my friends a week later! if you have any questions ask! |
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