Omari Joel Buchanan was born on Monday, December 31, 2012 in Silver Spring, Maryland. As much as he is an added blessing to our lives, we are faced with the heartache and challenges associated with raising a child with critical medical needs. Omari was diagnosed at 3 months of life with a rare genetic disease, Zellweger Spectrum Disorder (ZSD), where the prognosis is terminal. Upon diagnosis , we were given a life expectancy of 6 months to a year of life. God has blessed us, Omari is now 4 years old.
As a result of being diagnosed with ZSD, Omari is faced with many challenges. Some of Omari's obstacles include but are not limited to chronic respiratory issues that resulted in a tracheostomy, seizures, hypotonia, renal insuffienciencies, multiple neurological deficiencies, intellectual and cognitive delays, and visual and hearing impairment.
With a terminal and incurable disorder, doctors can only treat the symptoms and not the disease. Recently, we read the story of a young girl that suffered severe brain damage from drowning in February of 2016. Scientist were able to reverse the damages sustained using Hyperbaric Oxygen Therapy (HBOT). After hearing the story we contacted the treating physician, and through that office we were directed to facilities in the Washington Metropolitan area where Omari resides. However, these facilities could not accommodate him and a recommendation was made to contact a facility in Tucson, Arizona. It is our hope that with this therapy Omari can continue his journey to a better quality of life. The trip is scheduled for September 10, 2017.
Considering the fact insurance does not cover HBOT, we are estimating the cost of this trip to be $15,000.00 to include treatment (roughly $120-$160/session), a portable oxygen concentrator, transportation, a Register Nurse, and room and board for two to three weeks.
This is our story. This our life. If you can find it in your heart to help us help Omari, it would be greatly appreciated. Thank you and God Bless!
Omar and Jasmine Buchanan