How I felt the day both my children were diagnosed with Spinal Muscular Atrophy

The neurologist called to set up a follow up appointment for the results. We waited about ten mins for the neurologist, his assistant and a nurse to come in. The doctor sat right down and told me straight up that both of my children have SMA. Almost every site you visit tells you that most children diagnosed with SMA type 1 don’t survive past the age of two. Not knowing yet which type they were, I suddenly felt hot and nervous. The neurologist then went on to tell me how my daughter has SMA type III and my son has SMA II.  I knew as the neurologist was talking to me he could see my face turning red and see me trying to fight back my tears. All I could think about is how I had to stay strong and not cry in front of them because I did not want to scare them. To be honest, I couldn’t even focus on what he was saying. Then a genetics specialist comes in to explain to you why your kids have a genetic disorder. Then a nutritionist and a physical therapist.  All this happening right after you’ve just been told not one but two of your children (my only two BTW) have SMA. It was overwhelming to have all those individuals in one room all at once, while your mind is trying to catch up with what everyone has to say and the goals each specialist has for them. Whatever time I have to spend with my children I want to make sure I can give them the happiest life possible. I have two of the sweetest kids you could ever meet. I am grateful and blessed that they are mine.

5

Around the time they were diagnosed.

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2 Comments

    • You are right about becoming expert adapters. They always find a way to work through their challenges. I try to encourage them everyday not to give up. I started to follow your blog. I loved your post about people staying the hell away from you if they are sick. lol… we also stay in the house from November-March. Thanks for commenting on my post and I really hope you get approved for Spinraza.

      Liked by 1 person

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