Welcome

Our website is dedicated to our family and the struggle of our child, Nora, who has a terminal disease called Spinal Muscular Atrophy (SMA).

The purpose of this website is to celebrate Nora's life by sharing as much as we can.

We appreciate all your feedback and comments. Please keep them coming.

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The Goodentree Story

The story of our family and how the terminal diagnosis of Spinal Muscular Atrophy changed everything.

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InsideSMA

Our Sister website that gives advice to SMA families. We also sell a variety of products that help SMA children to move and interact and stay healthy.

 

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Nora's Videos

Nora's own YouTube channel. She has over 70 videos for you to watch with more always being added. Stop by and subscribe to support us.

 

What'd She Say Wednesday #22 - Tomorrow

What'd She Say Wednesday #22 - Tomorrow

 

The weekly series we will post every Wednesday as we collect some of the more "unique" phrases of Nora.  

Literally in the last two weeks, Nora learned the art of procrastination.  Her new favorite saying is that we will do something tomorrow.  Everything is being pushed off to tomorrow as you'll see...

Nora (having daddy put decals on her bedroom wall): "I want to do the next one  ... tomorrow"

....

 

Nora doing better

Nora doing better

Four days into this sickness and things are looking up.  Nora no longer has any sign of a fever, and her voice is begining to sound normal now.  The remain bits of the sickness is still causing some trouble though.  It's all about snot and saliva - huge dangers for SMA kids who can't swallow or...

Nora sick update - improvement BUT....

Nora sick update - improvement BUT....

Nora is showing signs of improvement today.  Her temperature is under control with the help of Motrin and she has less secretions thanks to Mucinex.  This is our first sickness using Mucinex and it's been great.  Her secretions are thinner as well, so it helps reduce the risk of another mucus plug.  Nurse Kim busted her 

Nora is sick. we're scared.

Nora is sick.  we're scared.

Nora began having heavy secretions and needed more suctioning than usual.  We also began to notice a change in her mood.  We were suspicious and obviously concerned.  The next day it got worse and suctioning increased.  That night none of us got any sleep since Nora would wake about every 45 minutes either crying or whimpering and wanting her ...