Guest Voice: Huntington’s disease is rare, but love isn’t
Reflecting on my journey as an advocate and caregiver for my mother
Ken To’s mother, Then Dji Fong, can no longer eat solid food like she could 10 years ago, but nothing can stop her from loving others. (Courtesy of Ken To)
Ken To lives in Hong Kong and is a primary caregiver for his mother, Then Dji Fong, who was diagnosed with Huntington’s disease in 2003. He is also at risk for inheriting the disease. Advocacy is an important part of Ken’s life. He witnessed the founding of the Chinese Huntington’s Disease Network and collaborates with the Hong Kong Mucopolysaccharidoses and Rare Genetic Diseases Mutual Aid Group and the Huntington’s Disease Youth Organization.
Growing up in a family impacted by Huntington’s disease, a rare and incurable genetic disorder, I feel compelled to share my exceptional life experiences and raise awareness about rare diseases.
My mother showed her first symptoms when she turned 50. For more than two decades since then, I have been her caregiver as she has lost almost all of her abilities to the disease.
She is now unable to walk, speak, or control her body’s movement. She can’t even remember things or recognize people. But look into her eyes and you’ll see nothing can stop her from loving!
From left, Ken To comforts his mother, Then Dji Fong, who has Huntington’s disease, during a bout of pneumonia requiring hospitalization. (Courtesy of Ken To)
Two years ago, she was hit once again by pneumonia and has needed to be tube-fed since then. It is absolutely not easy for her or for us as her caretakers.
Caring for my mother for over 20 years has been one of the most challenging journeys of my life. From the early onset of the disease, when her involuntary movements became awkward and even dangerous and her personality subtly shifted, we watched her face a relentless, heartbreaking battle with each passing year.
We navigated through the confusing phases of cognitive decline, witnessing her memories fade, often feeling helpless in the face of her deteriorating health. Now, as she relies on the feeding tube to sustain her, we grapple with the profound reality of her fragile state, balancing the grief of loss with the unwavering duty of care.
We, as a family, are learning each and every day. We feel genuinely grateful to see that she is still such a great, loving mom, and she’s an inspiration to me, as always!
Clockwise from front left, Ken To and his two younger sisters, Gillian and Joanne To, enjoy a meal with their mother, Then Dji Fong, about 10 years ago, before she became feeding tube-dependent. (Courtesy of Ken To)
To me, what’s more challenging than being a caregiver is the fact that I myself am at risk of developing Huntington’s disease. I have a 50% chance of inheriting the gene mutation that causes it. For a prolonged period of time, I could barely stop myself from losing hope.
My mental health has been greatly impacted over the years. It took tons of effort and courage to overcome the fear and learn to embrace the journey.
Advocating for rare diseases and increasing their visibility is also a significant aspect of my life. Over the years, I have been working closely with the local and international rare disease communities to raise awareness of the challenges these families face and encourage positive change in people’s lives. This is a mission very close to my heart!
To everyone impacted by Huntington’s disease: Never lose hope. Our disease may be rare, but love isn’t.
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