Brí 's Story
Imagine drifting in the stream of life, being navigated by the aimless current of its final destination; then suddenly, you encounter an abrupt shift in direction of the path; a path which you were certain would lead you to happiness and peace; but this abrupt shift has now been proven to test every element of your being. This is the significant trial that was assigned to our family, back in the year of 2000, when at the age of 5 years old, Brí was suddenly diagnosed with a rare chronic and life-threatening illness.
This condition’s primary medical complication is Hyperammonemia. This severe condition causes blood-ammonia values to rise to toxic levels. In this occurrence, significant impaired cognition is manifested through an acute crisis of hyperammonemia, metabolic encephalopathy, extensive lethargy and severe dehydration. The episodes and frequency of this disease are unpredictable and presents without warning. As such, it has been extremely difficult for Brí to manage this condition throughout her life.
It has been over 20 years, since the start of Brí 's battle with this diagnosis and its associated complications. The effects of being subjected to this type of disease, has been turbulent; as such, our family has been forced to find a therapeutic way to cope with such a traumatic introduction of a life-altering situation. Therefore, we are determined to continue our mission in increasing awareness, providing support to families or individuals dealing with OTCD; and ultimately, finding a cure for this rare disease.
"When the journey of life presents an unexpected detour...it is then, that we must press on to navigate the path to success."
-Nicole Renee Lyles, RN, CDS, LNC, ADV
Watch our turbulent 20 year journey...to Liver Transplant #1
(Click the below video to watch now!)
This condition’s primary medical complication is Hyperammonemia. This severe condition causes blood-ammonia values to rise to toxic levels. In this occurrence, significant impaired cognition is manifested through an acute crisis of hyperammonemia, metabolic encephalopathy, extensive lethargy and severe dehydration. The episodes and frequency of this disease are unpredictable and presents without warning. As such, it has been extremely difficult for Brí to manage this condition throughout her life.
It has been over 20 years, since the start of Brí 's battle with this diagnosis and its associated complications. The effects of being subjected to this type of disease, has been turbulent; as such, our family has been forced to find a therapeutic way to cope with such a traumatic introduction of a life-altering situation. Therefore, we are determined to continue our mission in increasing awareness, providing support to families or individuals dealing with OTCD; and ultimately, finding a cure for this rare disease.
"When the journey of life presents an unexpected detour...it is then, that we must press on to navigate the path to success."
-Nicole Renee Lyles, RN, CDS, LNC, ADV
Watch our turbulent 20 year journey...to Liver Transplant #1
(Click the below video to watch now!)
