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.

 

Apr22

Disney Pirate & Princess Adventure show

Disney Pirate & Princess Adventure show

We took Nora to see The Disney Jr Live Pirate & Princess Adventure show at the Knoxville Colosseum.  It was insanely risky at the tail end of cold and flu season being around hundreds of people.  We said we could only do it if we could somehow pull some special seating and Nora would have to wear her BiPAP mask.  So Jaime hit the phones and started making actual progress with a wonderful woman at the Colosseum.  Trust me, there are many more shows we want to take Nora to but are unable to do...

Mar29

We make a bath chair stand for Nora

We make a bath chair stand for Nora

 

 

So how does Nora bathe? Because we do keep her very clean.  Jaime used to get in the bath with Nora and for years, that worked great.  Then one day Nora was too long to spin around in the tub.  Bathing safely became a huge challenge.  Showering with Nora would be impossible because we need both hands to support her delicate neck and back. Plus wet soapy baby skin is about the slipperiest substance known to man.  In the shower, she would pop out of our hands like a well used bar of soap does.

In comes a bath chair - which is really just webbing supported by a steel and plastic frame.  It's large, heavy, never seems to ever completely dry, and we take it everywhere we travel.  FSMA.org loaded us our chair and its been a critical piece of Nora's equipment ever since.  There is only one caveat 

 

 

Mar10

Nora's helicopter and cabin weekend

Nora's helicopter and cabin weekend

First of all let us apologize for freaking some of our followers out. I had posted a picture of Nora and the helicopter on Intragram (tgooden) and it created a bit of a scare that Nora was being medflighted. So I'm sorry. That behind us, lets move on.  This trip was initially planned for Nora's birthday but had to be postponed because she got sick...

Feb20

Nora and the Tennessee snowstorm

Nora and the Tennessee snowstorm

Tennessee had one of those "once every decade" snowstorms a few weeks ago.  All told, we got a total of maybe 6-7 inches.  In this city the mere threat of snow is enought to close the schools.  With an inch or two it's a catastrphic event with cars in ditches, bread and milk shelves emptied out.  So this larger snowstorm was beyond comprehension for...

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