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Landen was born a whopping 8lbs 9.8oz and 21” long on August 29, 2018. He had some respiratory issues at birth, and spent 2 weeks in the NICU. We came home and everything was great! We were home with him for 3 months, then Landen’s cold started getting worse, and his breathing was more labored. We took him to the ER, where later he was transferred to the PICU at Wesley Children’s Hospital. Doctors started treating him for Rhino Enterovirus (a cold) and Pneumonia. Things started clearing up, but his lungs were still working extremely too hard. Landen’s lungs collapsed on January 2nd, and he was placed on life support - not how anyone wants to start off their New Year.
We had numerous testing done, and doctors were still drawing blanks as to why he was having so much trouble. Landen was intubated multiple times, and couldn’t stay extubated for more than 48 hours. On February 29, his 5 month birthday, we got the genetic testing results back that said he has SMARD1. We had no clue what that meant, or what that meant for our baby. Doctors were pretty clueless about the outcome as well. We learned the only possibility of him surviving, was getting a tracheostomy, and the thought of that scared us.
Landen had his tracheostomy and gtube placement on February 18, and immediately looked so much happier. His breathing was at ease. We knew right then and there, we made the best decision for our fighter. We’ve had a lot of bad days, but the number of good days are starting to outweigh the bad. Seeing our boy smiling after everything he’s been through gives us hope. We don’t know if gene therapy will be in Landen’s future, but we need to raise awareness and get a cure for these kids. They are the brightest, most loving little fighters out there, and they deserve a cure!