The Johnson Family

Theo James Johnson entered this world on August 18th after a full-term healthy pregnancy to Nate and Haley Johnson and older brother Owen. Once Theo was born he was quickly brought to the NICU. Theo lost a significant amount of blood during the delivery process and was having difficulty with his breathing. When Nate and Haley were able to meet him four hours later, he was hooked up to every machine imaginable. Other than this, Theo appeared to be a perfectly healthy baby. During the next 35 days, intensive testing was completed.

Over this period of time, Theo demonstrated responsive interactions with his parents, however, these interactions were inconsistent. The results from the various tests revealed Theo had a very rare AIFM1 genetic mutation. This gene mutation resulted in Theo being hypotonic. Additionally, the mutation impacted a number of other areas including: energy production, aspiration while feeding, lack of myelin around his nerves, elevated lactate levels, and MRI results that showed other concerns with his nerves.

Theo spent the next five weeks in the NICU attempting to find answers through various tests, having all functions monitored, and having surgery to place a G-Tube. Theo was able to meet the qualifications to be discharged after 5 weeks.

Within an hour after arriving home with Theo, Nate and Haley noticed that Theo suddenly stopped breathing and went into respiratory failure. At that time, Haley called 911 while Nate administered CPR until the ambulance arrived. Theo spent the next 10 days in the NICU and repeatedly went into respiratory failure which required the use of a ventilator on a number of occasions.

On October 2nd, Nate was with Theo while Haley was attempting to decompress with Owen at an apple orchard with family. During this time, Nate called to inform her that Theo had another episode of respiratory failure. Mayo approved for Owen to meet his younger brother after this episode of respiratory failure. That day was the first and final time that they would spend together as a family of four. Theo passed the next day on October 3rd in his parents arms just before Owen was able to arrive for another visit. Theo was loved and cherished by his devoted parents for 45 days before he passed due to his rare genetic condition.

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