Omari Joel Buchanan was born on Monday, December 31, 2012, at Holy Cross Hospital in Silver Spring, Maryland.  His parents, Omar and Jasmine Buchanan, were very excited at the idea of having a baby boy and anxiously awaited his arrival.  After a normal healthy pregnancy, the Buchanan’s were definitely caught off guard when faced with the events that shortly followed his birth.  Born ten days past his due date, Omari was admitted into the NICU for a problem with meconium.  Still, at this point, there were no signs of any serious health concerns besides the often seen meconium some babies acquire due to a prolonged stay in the womb. Unfortunately, two days prior to his expected discharge, Omari experienced an unexplained apneic episode that required oxygen intervention.  The NICU and his parents went into an immediate uproar; numerous tests were done to determine the cause of these apneic seizures. After experiencing somewhere between ten to twenty of these episodes a day, Omari was transferred to Children’s National Hospital, hoping to find an answer. Omari stayed an additional two weeks at Children’s National Hospital in Washington, D.C. under the close watch of their neurology team. Of course, these blue apneic episodes increased in number and begin to be a bigger threat as Omari desatted as low as seventeen. (Anyone familiar with oxygen saturation knows a person’s oxygen saturation should be anywhere between ninety and one hundred.)  After “testing the waters” with different anti-seizure medicines, the neurology team found the perfect match for Omari.  After four complete weeks in NICU, Omari was discharged.

Two months post NICU, the genetics department at Children’s National Hospital called to review Omari’s lab results taken while he was an in-patient.   Omari’s family received the news of his Zellweger diagnosis at the doctor’s appointment.   Because he presented with such disturbing lab results at such age young age doctors gave him a life expectancy of six months to a year. From that day forward, life became an emotional roller coaster.  But despite the many hospital stays, sicknesses, and additional setbacks, Omari lives!

Along the way, we were blessed to meet some dynamic people that served and continue to act as a great support system.  Joyce Wulf, a woman with two children suffering from Zellweger Syndrome, introduced us to DHA-EE.  Although Omari has not yet accomplished many physical capabilities, his lab work such has liver levels have improved significantly while on the DHA-EE supplement.  We are still hopeful for him to achieve the other milestones.

This journey is not an easy one. It’s overwhelming, frustrating, scary, emotional, and just plain hard. BUT with God all things are possible, and some way or another we are OK. Omari is a happy joyous baby who touches all who encounter him. We are blessed to have him in our lives, and look forward to the things God will do!

Omari’s Labs

Omari at two years old!

In loving memory of Omari 12-31-12 to 6-4-18