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.

 

Nora feeds a giraffe tongue at the zoo

Nora feeds a giraffe tongue at the zoo

Just a quick trip we took to the Zoo on a slow weekend.  This turned out to be pretty cool though since the Zoo recently opened a giraffe feeding platform.  The lady working there had just finished explaining why the giraffes would likely not come over to feed since they already had food.  We sulked away opting to buy Nora a giraffe mold-a-matic wax figure that Jaime and I both remember wasting our childhood dollars on.  

These are the (origionally wax-o-rama) machines with those two hot wax molding plates which, when together, and a short forever later, spit out a poorly detailed but hot as F$%^ animal shape. You never actually played with those..

 

What'd She Say Wednesday #5

Special 1/2 Birthday Edition

What'd She Say Wednesday #5

 

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 [watching a video]: "I want to see it again!"....

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What'd She Say Wednesday #4

What'd She Say Wednesday #4

 

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 at a red light]: "Daddy STOP!!"

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SMA Conference 2014 - Nora's Ferris wheel ride pics

SMA Conference 2014 - Nora's Ferris wheel ride pics

 

On the final day of our SMA Conference visit, we woke early again to attend the toy modification seminar.  It's really the one I look forward to the most since I get hands-on  participation... and Nora gets a toy out of it.  Plus soldering (a key activity in toy modification) is something I've spent a great deal of time learning.  Before Jaime and I began our long IT careers, we had both worked part-time all through college.  Jaime worked at Sherwin Williams so she knows far too much about paint, and I worked doing component replacement - literally soldering 4 hours a day for almost a year.  

After toy modification, we walked to the quaint little 5-6 block...

 

What'd She Say Wednesday #3

Nora looses a tooth and so do we!

What'd She Say Wednesday #3

 The third of a 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 terminal 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.

Tooth Edition:  Nora looses her first tooth, unfortunitly so do we...

 

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