Jenessa
Jenessa, mother of Zach (15), Alex (12) and Zoe (9). Alex has SMA Type 1.
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Two families, Two Paths
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You have to make a decision and they’re both bad choices.
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We’ve had some scary moments with the trach.
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Spinal Fusion Surgery: Deciding to do it
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So I started questioning …. And it was devastating.
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I did not want to isolate him. He loves school.
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Moving through the initial scariness, you can be trained.
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When he wants to do something, you just want to move heaven and earth.
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I wonder if I project my own feelings on to him.
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I felt like I had a clock ticking down in my head.
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You can still find a place for the vent and do fun things.
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You have to try to do what’s best for all your children.
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He's doing great. He's fantastic, even if his normal is terrible.
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Deciding to do the spinal surgery.
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They're still learning about the progression of the disease.
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I’m going to keep moving forward.
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Christian music just really helps me to stay balanced. God has a plan.
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I want parents to know to be empowered.
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I was scared of losing him. I was scared of him not have a quality of life.
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Alex's siblings, Zach and Zoe
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