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.

Subscribe on YouTube

Demo Image

The Goodentree Story

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

Demo Image

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.

 

Demo Image

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 Wed - USELESS EMPTY BRAIN

What'd she say Wed - USELESS EMPTY BRAIN

So Nora loves the movie Big Hero 6. I've mentioned this before, but the main character is a 13-year-old boy named Hiro Hamada. He's a genius. One of Nora's favorite quotes from Hiro came when he was failing to think of an idea to impress a robot instructor. After apparently trying for hours to think of something, he gets frustrated and slams his head on his desk and yells

The miscellaneous post

The miscellaneous post

Let's see... we finally cracked open Nora's birthday pinatas one evening.  Although there's really no more cracking or even hitting involved in pinatas anymore.  They all come with like two dozen pull strings attached now - only one string does the job and the rest just simply detach when pulled.  Which was fine because it was so stuffed with toys  since Nora doesn't eat candy.  I would have likely pulverized..

Nora's 6th birthday party weekend

Nora's 6th birthday party weekend

Nora's birthday was a blast.  Like I said in the previous post, didn't have a ton of plans so we did the private home party thing.  With Cold/flu season being upon us, we couldn't risk having a bunch of kids or adults around Nora.  

While Nora was sleeping Jaime and I filled a tremendous amount of mylar/foil balloons and decorated the house.  We had a big minion happy birthday banner and another one for Monster High, streamers, confetti, cupcakes etc.  We setup games like...

Nora's birthday is coming

Nora's birthday is coming

TJ: "What's the penguin's name?"
Nora: "Poop"
TJ: "You named him poop?"
Nora: "uhhuh"
TJ"That's awesome"

Nora's 6th Birthday is almost upon us.  We initially planned to take Nora on a dolphin encounter thing in Atlanta.  After Jaime found out there was a no camera rule, and you only got 10 minutes, that idea fizzled.  So we're going to have a little party at home 

The truth about shelf elves.

The truth about shelf elves.

Our Elf on the Shelf (Chloe) put on quite a show this year.  All thanks of course to Jaime who provided the inspiration for Chloe's antics each night.  Chloe's job was to monitor and report Nora's behavior - okay, let's be honest about Elf on the Shelf here.  They are recalcitrant little tattle tails! All of 'em!  they run to Santa each night to tell their little hearts out.  Then after they finish tattling on your children, they return to your home and get caught doing naughty elf things....

Little girl, huge heart

present for Hiro

Little girl, huge heart

Out of the blue Nora told us it was Hiro Hamada's birthday tomorrow.  Hiro is a fourteen-year-old boy and the main character in the movie: Big Hero 6.  He's also a 3 and a half inch figure that Nora adores and insists on having him in her hand, always.  

Hiro's impending birthday was mentioned occasionally throughout the evening, but honestly,  Nora says things like this all the time, so we never took this one too seriously...

Christmas Eve 2014

Christmas Eve 2014

This Christmas Eve was a blast.  Jaime had the day off but I had to work until 2:30.  So when I got home, she was napping... well, she never naps anymore so it was more like just watching a movie with her BiPAP mask on.  We call it her rest.  Nora had been so excited to have Jaime and I home.  She's been saying "I want to see Mommy and Daddy" for the...

Nora sees Santa Claus & Turnip

Nora sees Santa Claus & Turnip

We took Nora to see the big guy this past weekend at my company's annual kids party.  Nora was excited and kept asking "how much time?" on the drive there.  Nora didn't seem the least bit intimidated when it was her turn to see Santa.  She told Santa what she wanted which surprised us a bit.  Nora said "Turnip" referring to the character from a cartoon Christmas special she watched called Octonauts and the Very Vegimals Christmas.  The video is below and turnip is in the opening scene, if you want to see her

What'd She Say Wednesday #23

What'd She Say Wednesday #23

 

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

Nora's recent new "thing" is pointing out that things are different.  She also has started asking "how much time?" referring to how long until X or Y occurs.

....

 

Playing in the leaves

Playing in the leaves

Before it got brutely cold in Tennessee, we took Nora outside to play in the leaves.  Nora's best friend and next-door-neighbor "Claire" even came over to jump in the leaves.  Nora adores Claire who is about a year younger than Nora.  The two girls hold hands when they are together which is simply adorable.  If Nora sees Claire in her backyard, Nora tries so hard to get her attention but her little...