Love Isn’t Rare

February 9, 2024

by Ken To

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 in the community.

For more than two decades, I have been a caretaker for my mother who 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 recognise people. Yet, look at her eyes – nothing can stop her to LOVE!

A year ago, she was hit once again by pneumonia and has to be tube fed since then. It is absolutely not easy for her and for us too, as caretakers. 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 an inspiration to me as always!

To me, what’s more challenging is the fact that I myself am at risk. That means I have a 50% chance of inheriting the gene. For a prolonged period of time, I could barely stop myself from losing hope. It took tonnes of effort and courage to overcome the fear and learn to embrace the journey.

Throughout the years, I have been working very closely with the local and international rare disease communities to raise awareness of the challenges rare disease families face and encourage positive change to patients’ and their families’ lives. This is a mission very close to my heart!

To everyone impacted by rare diseases: Never lose hope! Our diseases may be rare, but love isn’t!

Instagram @ken.santoso

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