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Logan's Story

<3 Meet Logan <3

My name is Logan and I have SMA type 1. I was born July 6, 2012 and earned my angel wings on May 11, 2013.

I have beautiful bright blue/hazel eyes and love brights lights and ceiling fans. I enjoy big brother Lucas, Mommy, and Daddy reading books to me (especially books I can touch). My theme was dinosaurs, but then I fell in love with trains. I also love meeting new people, but always go back to Mommy within a few minutes (I am 100% a mommy’s boy).


Logan Red Ruth was born on July 6, 2012 at 5:32pm. He was a healthy, handsome little baby coming in at 6 lbs 12 oz and 19 inches long.

Towards the end of the pregnancy, we were in and out of L&D every other week because Logan wasn’t moving. We would get there, be hooked up on monitors and he would try to kick them off. Little did we know, the lack of movement was SMA starting its course.

At 5 days old, Logan had severe jaundice. We were allowed to bring him home, even though he was .2 away from being hospitalized. We had a box that resembled a mini tanning bed. He stayed under it for 4 days while home health care came every morning to take his blood. In a four-day time span, his bilirubin dropped from 18.2 to 12.1.

At 7 weeks, he was diagnosed with an inguinal hernia and GERD. He had surgery two days before he turned 8 weeks. It went extremely well with only one overnight stay. In regards to the GERD, we now know it was SMA that was causing the excessive spit up, not GERD.

At his two month check up, he was a happy, healthy, normal little boy. We had no concerns other than his spitting up. However, he wasn’t losing weight so we didn’t worry too much.

At three months, we were starting to become concerned that he couldn’t lift his head, but tried not to worry. He had a beautiful smile, loved to chat with us, and could move his head all around.

At four months is when everything started to come to light. We went in for our normal check up and was immediately sent in for some blood work and a head ultrasound. The ultrasound came back completely normal but his blood work had a few abnormalities. The next week we were seen by a pediatric neurologist. He confirmed Logan did not have any reflexes in his arms and legs, but could feel pain. Five more blood tests were ordered but we weren’t expected to get them before the middle of December. The doctor said he did not want to tell us what it could be because there was no reason to over worry.

The day before Thanksgiving 2012, we received the news. Logan had SMA type 1. He profusely apologized for the timing, but needed us to know. We walked straight out that appointment into the pulmonology appointment. The pulmonologist had worked with this disorder before and gave us our options. We waited six weeks to see a neuromuscular specialist at St Louis Children's Hospital. In those six weeks, we decided to celebrate month birthdays, create a bucket list and start our blog to record all our memories with Logan. We had no idea how long we would have with him, but wanted to make the most of every moment.

As with many SMA type 1 children, Logan’s muscle systems were affected.  He was not able to hold his head up, roll over or sit without support.  His greatest mobility came in the water; he so loved the water.  A decision was made to have a g-tube with button placed just shortly after Logan’s 7 month birthday while he was still strong and by 8 ½ months old Logan had lost the ability to suck and swallow.  Around 9 months, he lost his ability to be held or propped upright because of the increasing danger of choking on saliva.

Over the course of the 5 months following Logan’s diagnosis, we had many amazing days and great memories with our Logan boy. His smile could light up any room. His laugh was beautiful and he loved life to the fullest.   We celebrated birthdays, took trips to the zoo, learned to love the sound of trains, read books, played games, and tried to appreciate any bucket list item we could.  Logan received post cards from all 50 states (and many countries around the world), meaningful gifts, and well wishes from across the world.  He even had a star named after him. 

The last month, he had more down days than good days. The two weeks before he passed, he slept 23+ hours each day. However, it seems he waited until we were emotionally ready to let go before he passed peacefully in our arms, 5 days over 10 months old. 

We cannot describe our love for Logan and how much we miss him. He changed us. He taught us we could love deeper and redefined our levels of happiness. Life became about the small victories and slowing down to enjoy every minute.

This beautiful little boy is why we fight. Please consider joining our fight to find a cure for SMA.

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