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My Story

Hi!  We are Brady (9) and Colby (6), and we have Spinal Muscular Atrophy (SMA) type 3.  Our sister, Hailey, is 11.  Our Mom and Dad created this site to spread awareness of SMA and also for you to follow our journey.  So check out our story, and read about all the fun things we do and the challenges we face!


What is Spinal Muscular Atrophy?

  • SMA is a genetic and often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control and even swallowing
  • SMA is the number one genetic killer of children under the age of two
  • 1 in 40 people carry the gene that causes SMA
  • SMA effects all ages, races and genders
  • SMA is classified into four types based on milestones achieved at the onset of SMA
  • The patient with type III can stand alone and walk, but may show difficulty with walking at some point. Also, with type III, a fine tremor can be seen in the outstretched fingers.
  • There is no cure or treatment for SMA, but research provides hope.

What causes SMA?

Spinal Muscular Atrophy is an autosomal recessive disease. In order for a child to be affected by SMA, both parents must be carriers of the defective gene, and both must pass this gene on to their child. When both parents are carriers, the likelihood of passing this gene along to a child and having an affected child is 25%, or 1 in 4. In each pregnancy, there is also a 50% chance the child will be a carrier and a 25% the child will be completely unaffected.

 

Brady's Story:

We can say with confidence that Brady's development was completely "normal" until around age two. He actually reached milestones early; there was never any type of delay. During the 3-4 months following Brady's 2nd birthday, we noticed two things. He seemed to trip over nothing when walking and just fall to his knees and then fall backwards and bump his head. We also noticed he wouldn't step down off a curb or step up without holding someone's hand. After observing Brady couldn't step up onto the scale by himself, the pediatrician suggested doing a physical therapy evaluation (March '05). The PT suspected Muscular Dystrophy and sent us back to the pediatrician for a blood test. Normal results. A month later (May '05), we visited a neurologist, who was not at all helpful or concerned about Brady (when comparing him to other conditions he sees everyday). He acted hopeless that we would ever have a diagnosis. Wanting answers, we chose to have a muscle biopsy performed (July '05, 33 months old). The results suggested SMA, but the diagnosis was confirmed with a blood test that tested the specific gene (August '05).

We were thankful to have an accurate diagnosis so we could move forward. Knowledge is power. To be the best parents we can be and provide for Brady's needs, we need to understand everything we can about Spinal Muscular Atrophy.

After relocating to Tulsa, OK from Overland Park, KS in December '05, we were able to find a house that better suits our needs. We now have bedrooms on the main floor, and there are no steps going in/out of the house, a big boost to Brady's independence. Although his muscles won't really get much stronger, routine physical therapy is very important to maintain function and range of motion. Brady is now in 1st grade at our public school, and he's doing great...even riding the bus with Hailey!!

 

Colby's Story:

Our little innocent chub bub. At the time of Brady's diagnosis, I was 14 weeks pregnant. We never would've guessed that whatever was going on with Brady was something genetic. Each pregnancy has a 25% chance of producing a baby with the disease (when the mother and father are both carriers of SMA). At 16 weeks, we chose to do an amniocentisis to find out if our baby was affected by SMA. The answer was yes. Currently there is no way to predict the severity of the disease, but usually siblings are similarly affected. The general categories of Type I, Type II, and Type III are based on what milestones have been achieved by the onset of weakness.

Colby was born February, 20, 2006. He is 4 years old and also Type 3 like his big brother, Brady. He does have some weakness (not able to jump or walk up and down stairs), but we think he's stronger than Brady was at the same age.

Hailey's Story:

Hailey is 9 years old and in 4th grade.  Like the rest of us, she wants the doctors and scientists to find a cure. She knows they are each God's creation, and He has a special plan for each of them.

Pray for a cure in 2010!

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Shelley Nelson posted a new journal entry.

A short story I shared on Facebook yesterday.... A Crazy Beautiful Act of Kindness At the end of Brady's school day, there was an all-school assembly in the gymnasium.  ... Read more

Shelley Nelson posted a new journal entry.

A short story I shared on Facebook yesterday.... A Crazy Beautiful Act of Kindness At the end of Brady's school day, there was an all-school assembly in the gymnasium.  ... Read more

Shelley Nelson posted a new journal entry.

Merry Christmas! This is my favorite season of the year….even though we’re so busy checking off our lists, there’s so much special family time.  Lots of snuggling ... Read more

Shelley Nelson posted a new journal entry.

Happy 8th Birthday, Brady!We have had a lot going on lately!  Last Friday was Brady's 8th birthday!  And one week ago today, the boys and I traveled back to Salt Lake ... Read more

Shelley Nelson posted a new journal entry.

 Hi Friends!  If you will all FORGIVE ME for being “absent” with updates for the last 4 months, I am ready to jump back in.  It’s like falling behind with ... Read more

Shelley Nelson posted a new journal entry.

What’s your “normal”? It’s been almost 5 years since we were thrust into this “club” of neuromuscular disease and medical jargon and dying children.  I’m so ... Read more

Shelley Nelson posted a new journal entry.

Just a bump in the road!It’s been 2 ½ weeks since my last update expressing our concerns with Colby’s sudden falling down.  I am pleased to report that the falling ... Read more

Shelley Nelson posted a new journal entry.

Happy Easter from our family to yours! We are having the most beautiful weather this weekend!!  All kids are sleeping right now, getting in a good nap before we head to ... Read more

Shelley Nelson posted a new journal entry.

Happy 4th birthday, sweet Colby!   Like with so many other things, I’m running behind with my updates!  I’m a very on-time kind of person so that doesn’t make ... Read more

Shelley Nelson posted a new journal entry.

Back 2 Normal!           Brady is back in the groove today!  Meaning he’s at school for the full day without using a splint, and he’s ready to drive his ... Read more

Shelley Nelson posted a new journal entry.

Let's Close This Chapter! This was the day!  The cast came off and the pins came out (think: the rains came down and the floods came up).  First of all, I told you that ... Read more

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