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 #9

What'd She Say Wednesday #9

 

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

Background:  Nora is five and has type-1 SMA, a neuromuscular disease rendering Nora virtually paralyzed but highly intelligent.  She speaks without being able to move her mouth or tongue.  Her precocious phrases help define and showcase her amazing personality which is hidden by this terrible disease.

Nora [riding in the car]: "I want to go to Disneyland!"

....

 

Sunflower field hike

Sunflower field hike

Recently we took this hike to a somewhat secret sunflower fiield in the middle of nowhere.  Its a wild sunflower field so it's mixed with other crazy types of plants too.  We had to drive to a dead end gravel parking lot then begin our trek.  Thankfully the trail was paved or we would have had to turn around.  Nora's heavy stroller gets stuck so easily - we can't even push it across grass.  We walked perhaps a mile in with the sky threatening to drench us..

What'd She Say Wednesday #8

What'd She Say Wednesday #8

 

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

Background:  Nora is five and has type-1 SMA, a neuromuscular disease rendering Nora virtually paralyzed but highly intelligent.  She speaks without being able to move her mouth or tongue.  Her precocious phrases help define and showcase her amazing personality which is hidden by this terrible disease.

Nora [alone in the bathroom]: "Echo! Echo! ... Echo!"

....

 

What'd She Say Wednesday #7

What'd She Say Wednesday #7

 

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

Background:  Nora is five and has type-1 SMA, a neuromuscular disease rendering Nora virtually paralyzed but highly intelligent.  She speaks without being able to move her mouth or tongue.  Her precocious phrases help define and showcase her amazing personality which is hidden by this terrible disease.

Nora: "I don't want to watch this movie!" [Disney's Pocohontis]

....

 

What'd She Say Wednesday #6

What'd She Say Wednesday #6

 

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

Background:  Nora is five and has type-1 SMA, a neuromuscular disease rendering Nora virtually paralyzed but highly intelligent.  She speaks without being able to move her mouth or tongue.  Her precocious phrases help define and showcase her amazing personality which is hidden by this terrible disease.

Nora [terrified]: "I don't want to get a shot!!"

....