Cindy Yee Kong
Born in a small village in Fujian, China, and later raised in Hong Kong before immigrating to New York at age 10, she grew up with the hidden burden of a rare genetic neurological disorder called dopamine-responsive dystonia (DRD) passed down from both her parents’ recessive genes.
DRD is a genetic neurological disorder whose symptoms normally begin appearing during childhood, sometimes as early as infancy. Cindy’s symptoms surfaced when she was eight years old. She began having involuntary muscle spasms in her limbs and her feet began turning inward, like clubfeet, which makes coordination difficult. Unfortunately, symptoms of DRD have a tendency to be absent during the morning or after resting, but often worsen throughout the day. Stress can also have a negative influence and increase symptoms. It is commonly confused and misdiagnosed as cerebral palsy, as it is identified with involuntary muscle contractions like twitching and abnormal postures.
The disorder is named dopamine-responsive because using dopamine, a chemical messenger, often helps control or lessen the spastic movements. Without dopamine, dystonia occurs. Cindy’s body is unable to produce dopamine due to a mutation of her gene Tyrosine Hydroxylase. Tyrosine hydroxylase deficiency is an autosomal recessive disorder resulting from cerebral catecholamine deficiency. Tyrosine hydroxylase helps convert the protein-building block (amino acid) tyrosine to L-DOPA to a catecholamine called dopamine.
Her condition began with weakness in her right leg that gradually spread, leaving her with uncontrollable movements in her hands, feet, and face, plus an information processing disorder, short-term memory loss, and speech impediment.
Ms. Kong also had difficulty using facial expressions. She was unable to make subtle expressions or control her face and eyes to show emotional responses like confusion and anger– something called a “flat affect.” She had slight control on the left side of her face, but none on the right. These symptoms made even simple daily tasks difficult and left her vulnerable to bullying, misunderstanding, and alienation.
Yet her greatest struggles did not end with physicality. Cindy had to endure poverty, neglect, and abuse in her own childhood home. Living with an alcoholic father and a family broken down by hardship, she often felt isolated and invisible. Still, she held on to one unshakable truth: she was not to be defined by her pain.
For many years, Cindy went without a proper diagnosis, enduring endless doctor visits and failed treatments that kept her painfully and restlessly trembling. It was not until her mid-twenties that she was finally diagnosed with DRD. Her journey of treatment didn’t end there.
Her physical movement was under control with medicine, but she was still struggling mentally and unable to hold down a job. It took another two decades for her to find out she has a learning disability and short-term memory loss. It brought clarity and opened the door to more treatment.
In spite of everything, Cindy earned a degree in Sociology from Stony Brook University, one of New York’s most prestigious institutions. Education was a passion for her, but it did not come easily. The intense effort she had to put in to work around her obstacles grew the courage and resilience that built her.
After college, Cindy worked as a social worker, serving others who, like her, faced harsh circumstances and were often invisible to the outside world. She understood what it meant to feel voiceless and overlooked, and so she made it her mission to ensure others felt what she had to fight for: to be supported and seen.
Today, Cindy continues her commitment to compassion as the CEO and Founder of Grace Animal Rehab Center (GARC), an organization dedicated to the rescue and rehabilitation of injured and abandoned animals. Just as she once refused to give up on herself, she now ensures that vulnerable animals are given the proper love, care, and dignity they deserve.
Living with dopa-responsive dystonia remains an ongoing challenge, but Cindy shares her experiences openly, advocating for awareness and compassion for those with rare conditions. She speaks honestly about them while educating others about the realities of neurological disorders that are often misunderstood.
Her memoir, The Eyes of the Lion, tells her story of survival and becoming. It is a moving account of overcoming abuse, disability, and despair, and finding purpose through faith, education, and service.
If her journey resonates with you, Cindy invites you to read her memoir, support her work through Grace Animal Rehab Center, and join her in proving that second chances are possible — for people, for animals, and for life itself.
References:
Wikipedia contributors. (n.d.). Dopamine-responsive dystonia. In Wikipedia. Retrieved September 25, 2025, from https://en.wikipedia.org/wiki/Dopamine-responsive_dystonia
Mayo Clinic. (n.d.). Parkinson’s disease — Symptoms & causes. Retrieved September 25, 2025, from https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055
WebMD. (n.d.). Flat affect in schizophrenia, depression, autism, & more. Retrieved September 25, 2025, from https://www.webmd.com/mental-health/flat-affect
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Cleveland Clinic. (2022, March 23). Dopamine: What it is, function & symptoms. Retrieved from https://my.clevelandclinic.org/health/articles/22581-dopamine
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