Benson's Story

Benson was born at 38 ½ weeks gestation.  It was a completely unmedicated, natural birth.  He was healthy and beautiful.  We requested to go home early and were released from the hospital just 24 hours later.  Benson was 6lbs. 15oz. at birth.

Birth day

After just seven weeks, he had gained four pounds!  He was growing like a little weed.  The nurses at the pediatrician’s office joked that he was soon going to be bigger than his older sister, who is just 16 months older and on the small side.   

Benson, 2 months

Looking back, there were a few indicators of problems long before we realized it.  They were subtle, like a small decline in his seventy-fifth percentile growth.  Then there was that time I held a friend’s baby, who was the same age as Benson; and thought, this baby is really rigid, I like how cuddly Benson is. He hit all his milestones within the range of average.  At eight months old he started commando crawling.  We called it his wounded soldier scoot because he didn’t use his legs, at all.

Benson, 9 months

 I started passively looking for answers at around nine months.  We talked with the pediatrician, asked friends, google.  He wasn’t pulling up to stand and was still scooting without using legs.  At 12 months, with no progression in his gross motor skills, we took him to a different pediatrician for a second opinion.  This pediatrician estimated his gross motor skills to be at about a 6-9 month developmental age.  At the time, this was shocking.  We were still in denial about how much strength he was lacking and absolutely nothing else seemed wrong.  The doctor recommended we either 1)see the neurologist 2)start physical therapy, or 3) wait and see if he catches up.

Benson, 12 months

In October of 2011, my husband and I were talking about possible diagnoses and I had the profound impression that something WAS wrong and I needed to do something now.  The next day I scheduled an appointment with the neurologist and contacted Early Interventionto get physical therapy started.  I called the neurologist in October and the soonest I could get an appointment was January.

November was a rough month for me.  I spent countless hours researching, googling, and reading the same things over and over.  Praying for an explanation other than a neuromuscular disease.
In January, we went to our inital consult with the neurologist.  My parents came with me since my husband was unable to get work off.  The doctor mentioned SMA but recommended NOT googling it.  I actually listened for once.  We were scheduled for an EMG three weeks later.

At the EMG, it showed that Benson was a classic case of SMA.  The nerves responsible for sensation were responding appropriately but the nerves for motor skills were not.  The doctor still would not say it was SMA for sure.  She wanted to do genetic testing to confirmthe diagnosis.  The results came back about three weeks later, positive for SMN1 deletion.

The peak of Benson's strength was at around 12 months.  Since that time, he has been gradually losing more and more.  We are doing our best to keep his losses to a minimum.  It feels like it is a constant battle against time and a nasty invisible disease.

There is a light inside Benson that draws people to him.  He is a handsome little guy and a charmer.  I have no doubt that, despite the physical limitations he may have, he WILL do great things in life.

"Embrace The Suck"

To follow Benson's blog click the following link http://lynetteandjon.blogspot.com/2012/08/bensons-storya-post-for-friend.html

To make a donation to help save Benson and his friends go to www.sophiascure.org/donate