Colbi Cate #MitoWarrior

Colbi Cate Bonaventure, known to many as “CoCo” has recently been diagnosed with a rare mitochondrial disorder, also known as Alpers-Huttenlocher syndrome. This is a very rare disorder and currently there is no cure. Colbi was first diagnosed with epilepsy and was recently hospitalized due to a virus that caused severe fatigue, dehydration, and liver impairment. At that time, we were waiting on the results of genetic testing related to her new diagnosis of epilepsy. It was on Thursday evening, September 17, 2020, that we were given the devastating news that Colbi’s genetic testing results showed that she has this syndrome. The mitochondria in our cells are responsible for creating 90% of the energy we need to support organ function and sustain life. The parts of the body such as the heart, brain, muscles, and lungs, that require the most energy to function, are most affected. With this syndrome, the mitochondria in Colbi’s cells are not working correctly to provide what her body needs. Currently Colbi’s brain has been affected which is why she has started having seizures. Her liver has experienced a small amount of damage also. Colbi is currently followed by doctors in Baton Rouge, but there will be doctors in New Orleans that she will be seeing also. At this time, there are only three places in the United States that are studying this disorder, New York, Ohio, and Washington. It is inevitable that there will be many trips to these states as we try to search for treatment for Colbi. Her parents are also facing time off from work as Colbi faces multiple doctors’ visits and hospitalizations. We are asking for prayers for sweet Colbi and her family and any other support that you can give to help them through this difficult time.