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 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 ...

What'd She Say Wednesday #20 - terrifying sound

What'd She Say Wednesday #20 - terrifying sound

 This update was hard, but it's the truth.  Nora has been asking why she makes this noise.  She's noticed it since we return from the beach. It's a sound she has made for awhile now and it must be really bothering her.  The sound is a rhythmic puffing she does ... like taking tiny breaths and making an "uh" sound on the exhale over and over again.  She does it most of the day but it seems to be worse in the evening.  However, if she becomes completely absorbed in something, her breathing slows so she won't make the sound. We've been teaching her how to take long slow breaths too which works to stop it.  He numbers (oxygen saturation) are still good, so it's not that she's unable to get a breath.  

We are just terrified of what this means for Nora.  I think Nora is scared too since she keeps asking us why she does it - she even asks her toys.  We never give her the full answer ... we can't , she's not old enough to understand and I fucking can't tell my daughter the truth.

Nora (upset): "I keep going Uh Uh Uh" ....

 

Zarina the Pirate Fairy

Zarina the Pirate Fairy

One of the halloween events we look forward to each year is Boo at the Zoo.  It's a trick-or-treating event that is put on by the Knoxville Zoo.  The "treat trail" takes you through the zoo stopping at each of the 23 treat stations.  Thousands of trick-or-treaters attend this super fun event and with the help of some special people at the Zoo, Nora got to be ...