goodentree

a celebration of Nora's life.

Nora was born with a terminal genetic disease called Spinal Muscular Atrophy (SMA).
At 6 years, we had to watch SMA take nearly everything from Nora.  

This site is her legacy, so when she's gone, this will remain to tell her story.

We truly appreciate all your messages and comments. 

The goodentree story

The goodentree story

The background behind the website and our family. How three letters brought our carefully planned lives crashing down.

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The Nora News blog

The Nora News blog

See Nora's recent adventures and activities with pictures and video. This is our blog, where we speak freely about our fears and the struggle of raising an incredibly smart, yet terminal child.

We are not afraid of words or language, so if you're sensitive about honesty and occasional colorful language, this site is going to be a big bummer for you.

Nora News blog

How Facebook is hurting SMA

Believe it or not, SMA information, especially information on how to care for a child with SMA, is on the decline.  The number of children diagnosed with SMA isn't getting smaller, so what's causing this? The answer may surprise you: Facebook.  To understand this, you have to understand a bit about the internet & Facebook (which are not the same thing) and a bit more about how Google searches work - which is the key to the whole issue.

Read the top 5 reasons Facebook is failing SMA

Today, a majority of diagnosed families are on Facebook, using a private invitation-only group called SMA Family. There have been another 10-15 groups that have split off from SMA Family such as SMA Moms, SMA Support System, SMA Family Toxic-Free Lifestyle, IEP Support SMAstyle and nearly countless other small ones.  Every few weeks someone seems to create yet another group, in the hopes of being the next "big thing."  Almost all these groups are private, so you'll need to be invited.

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