Darrien’s fight against Huntington’s Disease

I am posting this for our Grandson Darrien with his story written his Aunt Kris and Mom Andrea...

Dear Family & Friends ~

As you may or may not know, Darrien has been diagnosed with a rare genetic disorder called Huntington’s Disease. This is an inherited, terminal disease that causes a progressive breakdown of nerve cells in the brain. Huntington’s has a broad impact on a person’s functional abilities and results in uncontrolled movements, memory loss and psychiatric disorders. Darrien’s father had Huntington’s disease and was diagnosed about 7 years ago. He lived with it throughout his adult life, until he unfortunately passed away a year and a half ago at the age of 44. Since Darrien has developed symptoms at a young age he has what is called juvenile Huntington’s which progresses faster. There is no cure for this disease but there are medications for some of the symptoms. Although this will help manage the symptoms it will not prevent the physical and mental decline of the disease.

We knew there was a 50% possibility that Darrien could have Huntington’s since his dad was diagnosed with it. We took him in to be tested at the age of 16 per his request, but the state of Arizona denied the order and said he can not be tested until he is 18 years old, as a positive result would be too heavy for a child to bear knowing the outcome. Darrien continued on to graduate high school and soon after he turned 19 he decided to join the Navy with an ASVAB score of 93 where he tested for Nuclear Engineering and passed with flying colors. He started to notice symptoms during his training at boot camp. Although it was a challenge, Darrien achieved his goal and graduated in December of 2019 from Naval Station Great Lakes in Illinois. He was then stationed at the Naval Weapons Station in Goose Creek, South Carolina where he would have two years of schooling for his MOS. It was during this time Darrien began to struggle when putting his mental skills to the test and noticed the uncontrolled movements that were starting to happen. Others noticed too and would question him. He still remained strong as Darrien is a very driven and committed individual who does not like to give up. In October 2020 we made the decision to work on getting him home so he could spend his life close to his family.

Darrien was devastated as he stated “leaving my career is harder than all of this”. Darrien was honorably discharged from the USN and moved back home to Arizona in January 2021. Darrien was officially diagnosed with Huntington’s this February 2021 and has since had an increase in symptoms with speech, involuntary movements, and memory. Darrien has medications that help with some of these symptoms which allow him to live a milder day to day life. We will continue to seek out medical specialists to find the best ways to help Darrien regulate his symptoms and strengthen him mentally and physically. As of now Darrien is not able to be functional at work and we are trying to get him in a comfortable financial situation for himself while he navigates the process of financial benefits. We also want Darrien to obtain any recommended therapy and/or medications that may not be covered under his insurance plan. While we all have immense empathy and heartache for Darrien, we are so proud of him, and we are rooting him on with encouragement, positivity and prayers. Any prayer or donation you would like to contribute to Darrien’s journey is appreciated more than we could ever express. They say we’re not here for a long time, but we’re here for a good time. We just want Darrien to have the BEST time! “I can do all things through Christ who strengthens me” Philippians 4:13