4 comments on “What we want you to know about SMA

  1. Tony I am so glad that you and Kristin are trying to inform people about SMA. We pray every day there will be a cure for this disease…the sooner the better. Jadon is so lucky to have you two for his parents because you are willing to fight for a cure. We pray for that precious grandson every day.

  2. Thanks for the information. Are there any symptoms for this disease? I’ve never heard of it before, I just saw a post about it on Facebook and decided to research it a little more.


    • Martica,

      There are 4 main types of SMA with Type 1 being the most severe. As a general rule the type is dictated by age of onset and furthest milestone reached. The other 3 types would have similar symptoms but less severe.
      These are symptoms for a type1 (Usually diagnosed between 0-6 mnths of age):
      – Muscle weakness, limpness in the arms and legs. “floppy baby”
      – Most type 1s will never sit on their own and won’t be able to hold their head up
      – A weak cry, cough, and swallow
      – Their belly will be very active during breathing
      – The chest will be narrow and the belly rounded giving the torso a pear shape
      – Most will develop a frog-leg position when lying flat on their back
      – The tongue often twitch

      These are several symptoms but the child may have all or only a few of these. When Jadon was diagnosed he ate very very well and the doctors did not believe us.

      Thank you for your interest in learning more about the disease. If you have further questions please do not hesitate to ask. You can ask here, or email us at JadonsHope@sbcglobal.net

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