• Nora's first Spinraza injection

    Nora's first Spinraza injection

    I had hoped to delivering good news, or at least an optimistic view about the road ahead; however, Nora's first Spinraza™ injection has made us question continuing treatment. There is a specific point I need to make before I begin. The "complications" we experienced were not attributed to Biogen, the drug Spinraza™ or the actual procedure.  All of the frustration and anger we feel is specific to our local medical facility.  In fact, Biogen was a huge reason why we were able to get this drug.  We have been reading all of published medical documents and talking to other families who received injections since its release in December.  

    Note: There is language in this story that some may find offensive.

    I have included it to give an accurate portrayal of our emotions, as most of this post is in dialog format.

    Continue reading...
  • Mother's Day

    Mother's Day

    Happy Mother's day to one amazing momma.  Few could ever hope to match all that she does for her family.  She somehow finds a way to amaze Nora and I almost every single day.  Nora and I would be lost without her.  She deserves more praise than I could ever give.  

    Continue reading...
  • The Spinraza update

    The Spinraza update

    On December 23rd, 2016 the first ever treatment for SMA was approved by the FDA. The news was exciting, terrifying and saddening all at the same time. With all of those mixed emotions, we were also scared of what this would mean for Nora and our family. We have waited almost eight years to see a treatment or cure hit the market. Since the day she was diagnosed, there was hope that a treatment was just around the corner; one more year, two more...

    Continue reading...
  • Boo at the Zoo 2016

    Boo at the Zoo 2016

    An October update?  but it's December!  Yea, I know, [voice inside my head], but we need to get caught up and hopefully stop your constant nagging.  Sheesh

    I am going to try my best to get all of 2016 caught up.  So prepare your hearts for Nora updates henceforth. 

    Okay, way back in October, we took Nora to her 5th Boo At the Zoo event.  These trips have only been possible because of how absolutely wonderful and kind the staff is at the Knoxville Zoo [Yes, you Allison].  Each year, they allow Nora special private access to this awesome event.  There are literally thousands of families that arrive in costume to trick-or-treat their way through the zoo.  The turn out is simply...

    Continue reading...


My wife and I had been married for three years when we decided to start a family.

To prepare for this life-altering event, we moved across the country to find jobs that were stable and a city we felt was safe to raise a child. Once the decision was made to begin trying, we got pregnant almost immediately. Like all expectant parents, the next nine months were exciting; we decorated our nursery, bought cute baby clothes and toys, read every baby book Amazon had, and worried about being good parents.


What is SMA?

Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing.

It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.

SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal, and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories. The determination of the type of SMA is based upon the physical milestones achieved. It is important to note that the course of the disease may be different for each child.


SMA Carrier Testing

Spinal Muscular Atrophy is a genetic disease.  It's something you're born with, it's not something you catch.

Certain people carry the potential for the disease - these are called carriers.  Carriers do not have the disease themselves but are the building blocks to create a child with SMA.  If two carriers,

Read More

What exactly is a mucus plug?
Mucus plugs are the single scariest thing to a parent or a caregiver of a child with SMA.

It is a condensed ball of very thick secretions that blocks your child’s airway. To put it in simple terms, it closely resembles a hairclog occluding or blocking your sink drain. There is enough room for some of the water to pass but not enough to keep the sink clear.  The plug itself may not be reachable by a suction catheter.  Plugs can occur in the bronchial tree deep into the chest.  This is why the Cough Assist is so vital to restoring their airway.


keeping SMA healthy

How do we survive sick season?

No, people probably aren’t going to like it and, yes, they are probably going to fight you the whole way

The CDC says that cold and flu season PEAKS in November and goes through April. However, for SMA families the preparation begins long before that. We can’t wait until there is a sickness already upon us because by that time it may be too late. So we prepare. We prepare to become anti-social hermits, all to save the lives of the children we love so dearly. Whereas you can control who will socially enter our home, such as friends and family members, what do you do about those that are directly involved in the care of your child, i.e. therapists and nurses? There is a process that will help insure that your child will be exposed to as little potential for infection as possible.

goodentree    /ˈgo͝odənˌtrēˈ/   noun

derived from our last name: Gooden and the idea of a family tree We came up with the name after we made the decision to start a family (have a child).
When Nora was born and diagnosed with the terminal disease SMA, her story quickly spread, and goodentree became established.