HONG KONG (SE): “A special child transforms a mother’s life,” says Gracy Tong, vice provincial coordinator of Faith and Light in Hong Kong. “My daughter has taught me not only how to live, but how to love.”
Tong speaks from deep personal experience. She is the devoted mother of Jeanne Le Guluche, her 31-year-old daughter born with an intellectual disability known as Cri du chat [Cat’s Cry] Syndrome, a rare genetic disorder first identified in 1963 by French paediatrician Jérôme Lejeune.
The condition, resulting from a partial deletion on chromosome 5, causes distinct physical and developmental challenges, including the high-pitched, cat-like cry from which the syndrome takes its name.
Tong recalls the beginning of her journey as a mother vividly. While studying in Paris, she married and later gave birth to Jeanne. Her daughter’s arrival was sudden, with the delivery unusually quick due to her smaller head size.
After returning to Hong Kong when Jeanne was one-year-old, Tong noticed significant delays in her daughter’s development—speech was slow to come, and frequent mood swings saw her banging her head against the sides of her bed. A geneticist later confirmed the diagnosis of Cri du chat Syndrome.
The name reminded her that the baby’s cries were unusually soft and high-pitched, like a kitten, but she had not paid much attention as she was more concerned about practical issues, like her feeding difficulties.
“I immediately turned to God in prayer,” she remembers. “I asked him to guide me on how to care for her.”
It broke my heart. He brought us back to France to gain a legal advantage because of his permanent residency there
A mother’s sacrifice and courage
At the time, Tong was working in the demanding fashion industry. Recognising the need for flexibility in order to care for Jeanne, she gave up her career and became self-employed as a wine-seller. When their daughter was around five, her husband persuaded her to move back to France. It was there, devastatingly, that he announced his intention to divorce her.
“It broke my heart,” Tong recalls. “He brought us back to France to gain a legal advantage because of his permanent residency there.” While he refused to disclose the reasons for the divorce, Tong knew one of his intentions was to place their daughter in a rehabilitation centre—a decision she strongly opposed.
“I was the one who gave birth to her. Even though she is mentally-disadvantaged, as a parent, I must provide her with a home of love and friendship,” she says.
Her husband eventually left, providing no financial support.
Alone in France, unable to speak fluent French and without family or a job, Tong faced a complex legal battle over custody of the child.
After years of negotiation, she was finally allowed to return to Hong Kong with Jeanne on the condition that she would bring the child back to France to visit him twice a year. In 2007, the Ecclesiastical Court of Paris annulled the marriage after four years of proceedings.
I was the one who gave birth to her. Even though she is mentally-disadvantaged, as a parent, I must provide her with a home of love and friendship
Faith and Light community
Life as a single mother to a child with special needs was daunting. Tong recalls having to be constantly vigilant, calming Jeanne when she was distressed and preventing her from running into traffic or causing accidental harm to herself and others.
However, she found solace and strength through Faith and Light’s L’au de Vie [Water of Life] community in Paris, which she joined in 2000. “I met parents from all walks of life, each facing similar struggles,” she says. “Their friendship and understanding gave me hope.”
In 2001, she attended the 40th anniversary of Faith and Light in Lourdes, where she met Father Giosuè Bonzi of the Pontifical Institute for Foreign Missions, who became her mentor in Hong Kong. “Father Bonzi taught me that caring for a special child is a grace from God,” she says.
in 2016. Photo: supplied
Returning to Hong Kong in 2005, Tong became an active member of the St. Margaret’s Faith and Light community. Jeanne joined as well, participating in community gatherings and catechism classes for people with intellectual disabilities at Lok Yung Yung [Happy Together], a programme run by the Diocesan Pastoral Centre for the Disabled.
Jeanne, who once refused to attend Mass, had a profound change of heart after participating in a pilgrimage to Rome during the Year of Mercy in 2016. With her mother and stepfather, Jacques Dejean—whom Tong calls “a blessing from God”—by her side, Jeanne grew eager to receive the Eucharist.
I met parents from all walks of life, each facing similar struggles. Their friendship and understanding gave me hope
Tong expresses deep gratitude for her husband of nearly two decades, Jacques. Despite his busy schedule as a music publisher, he lovingly cares for Jeanne, often taking her to theme parks and accompanying them to Faith and Light gatherings.
“He shows me that love is powerful,” Tong says. “If we can love like Jesus, we have great strength. If we love our special children as we love ourselves, no problem is insurmountable.”
Living in the present, hoping for the future
Five years ago, Tong was offered a place for Jeanne in a residential rehabilitation centre by the Hong Kong government. However, Jeanne has chosen to remain with her family, cherishing their close-knit life together and her involvement with Catholic groups.
Two years ago, Tong was appointed vice provincial coordinator of Faith and Light. In addition to leading the community at St. Anne’s Church in Stanley, she hopes to expand Faith and Light into more parishes across Hong Kong. Though Father Bonzi has retired and a new chaplain is yet to be appointed, Tong remains hopeful.
While she treasures the present, the 70-year-old mother admits to some concerns about the future. Medical experts once told her Jeanne’s life expectancy might not surpass 40, but recent studies suggest it could extend to 50 years or more.
“My hope is simple,” she says softly. “I just want to be with her every day—to live joyfully together, and to bring her on pilgrimages around the world.”
