Love Isn’t Rare: A Caregiver’s Journey Through Huntington’s Disease

  • Ken To
  • 4 Mins Watch
  • 15 Sep 2025

Growing up in a family impacted by Huntington’s Disease, a rare, incurable genetic disorder, I feel compelled to share my journey and raise awareness in the community.

My mother showed her first symptoms at 50. For over two decades, I have been her caregiver, watching the disease slowly take away her ability to walk, speak, remember, or even recognise loved ones. In recent years, her health has become increasingly fragile, and she now depends on daily nursing care. It has been a heartbreaking journey, yet when I look into her eyes, I still see her love shining through. That love inspires me to keep going.

What I Wish People Knew

Huntington’s Disease is like experiencing Alzheimer’s and Parkinson’s at the same time. To me, the cognitive decline is even more devastating than the motor symptoms because it erodes a person’s personality and takes them away from within.

Challenges and Rewards

Caring for my mother has been the hardest journey of my life. From managing involuntary movements to coping with her fading memories, every stage brought new struggles. I often felt helpless. Today, with her fragile health, I balance the grief of losing parts of her with the duty of ensuring she is cared for with dignity.

We are fortunate to have a dedicated migrant domestic worker providing daily care. On weekends, I step in personally, handling feeding, personal care, and everything needed to keep my mother safe and comfortable. These tasks are demanding, but they are also my way of honouring her love.

Photo: Ken and his mother sharing a quiet moment — a rare outing filled with love and resilience.

What I’ve Learned Along the Way

The journey can feel overwhelming, and I know how deeply it can affect one’s mental health. For years, I battled fear, not only of losing my mother but of my own 50 percent risk of inheriting the disease. It took immense courage to learn to embrace the journey.

My advice is to seek support. Whether it is family, friends, or a rare disease community, do not try to carry everything alone. You cannot pour from an empty cup. Caring for yourself is just as important as caring for your loved one.

Today, advocating for rare diseases is my mission. By raising awareness and connecting with others, I hope to bring visibility to families like mine and create positive change.

To everyone impacted by Huntington’s Disease: never lose hope. Our diseases may be rare, but love isn’t.

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