Huntington’s disease dominated my childhood. In 2003, when I was nine years old, my mum was officially diagnosed, but my family believes she exhibited signs as early as 1999. Her disease progression was swift and brutal. Only two years after diagnosis, in 2005, she moved to a nursing home because her emotional mood swings, outbursts, and out-of-control movements were too much for even a team of family members to handle.
It was in this nursing home that she would lose her ability to speak. A few years later, she developed difficulties swallowing. Closer to the end, her balance betrayed her. She was subsequently forced into a wheelchair, in which she developed many bruises and sores. As a teenager, I spent weekends, holidays, and summer vacations visiting her in that nursing home. Because she couldn’t speak, it was very much a one-way conversation. She knew everything I was going through, yet I could not relate to anything happening to her. I never had the opportunity to ask her how she felt about her fate, which became even more devastating when I learned that her disease could one day become my own.
On January 27, 2011, my mother passed away from complications due to pneumonia. I was seventeen years old. Over the next year, I embraced the “freedom” I felt from the disease. My mother was at rest and no one else in the family was suffering. However, this “freedom” was short lived as I soon made the decision to undergo genetic testing at age 18. Not only that, I decided to make a documentary about it.
Almost two and a half years later, I am now only a few months away from releasing my documentary. With my genetic testing journey complete, I am re-creating a new identity as a college freshman at Stanford University in California. The past few years have been full of hope and excitement as I watch the scientific world progress closer and closer to a cure for the disease that tried to take over my family. Thankfully, my family is stronger than anything Huntington’s disease tried to dish out. Today, we are using that strength to do everything in our power to make sure it never devastates another loved one again.