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