http://www.tnp.sg/findinghope/
Jane’s smile hides her mother’s fear.
“My daughter is a ticking time bomb, there’s really no way of telling what will happen tomorrow,” says 55-year-old Madam Grace Chin.
The matter-of-fact statement is a tell to her stoicism. Her fingertips trace across her daughter’s forehead to put her fringe back in place — done with an unselfconscious ease only a mother can have.
The first thing that grabs your attention about Madam Chin is her eyes — they have a strong, steely gaze yet every so often a glisten of hope comes through.
A plaintive hope that comes from caring for someone with a terminal disease.
It was not always this way. Jane used to be fit and healthy.
She enjoyed cooking, travelling and going out with her friends for most of her teens.
That changed when she was diagnosed at 17.
Jane suffers from severe muscle dystrophy and is wheelchair-bound.
Her condition means that she does not talk much. One of her doctors even dubbed her the "silent fighter".
The degenerative nature of her illness has led to the progressive deterioration of her body, affecting her kidneys, lungs and heart.
She experiences splitting headaches, vomiting, loss of appetite, seizures and strokes on a regular basis.
For her mother, Jane's condition is heartbreaking.
“I was in denial. I couldn’t accept the fact that this could happen to my daughter,” says Madam Chin.
Why me? Why my child?
Madam Chin says Jane was healthy and active in her adolescence. There was no indication that anything was amiss.
However, early signs of trouble showed in 2004 when Jane abruptly lost her hearing. She was 15 and in Secondary 3.
Despite this, she was able to overcome her disability and sat for her O-level examinations the following year.
Her results secured her a place to study Applied Food Sciences and Nutrition at Temasek Polytechnic.
During a mandatory pre-enrolment health screening by the polytechnic, she was alerted to abnormal amounts of protein in her urine.
A series of tests followed, revealing a prognosis of suspected kidney failure.
Then a muscle biopsy confirmed the presence of MELAS.
From that point, the family’s life was turned on its head.
The unpredictable nature of her daughter’s illness means that Madam Chin can never let her guard down.
I think what’s more painful than seeing her in this condition is not knowing when things will take a turn for the worst.
Apart from being a full-time housewife and caregiver, Madam Chin is also her daughter’s closest friend and treasured confidant.
From accompanying her daughter to weekly dialysis sessions and doctor’s appointments to administering hourly medication and keeping vigil by her bedside at night, Madam Chin tirelessly ensures all her daughter’s needs are met.
Whether it’s watching the latest Korean dramas or trying out new recipes together at home, mother and daughter share an inseparable bond.
Of the many things that Jane misses, she misses the company of friends most of all.
The MELAS has made every word a struggle for Jane to pronounce, each one taking a whole breath to enunciate.
“In the past, my close friends and classmates would come visit me whenever they could,” she says before pausing to regain her strength.
“But everyone is so caught up with life these days and most of them are working or married, so I hardly see them.”
The self-confessed travel fanatic says her condition prevents her from doing things most of us take for granted.
Some days, it can be a little tough when I see friends living their lives travelling and shopping while I’m bound by a wheelchair.
A playful smile emerges, similar to the one usually enjoyed by her mother.
“But,” she says, “life goes on”.
Jane’s smile hides her mother’s fear.
“My daughter is a ticking time bomb, there’s really no way of telling what will happen tomorrow,” says 55-year-old Madam Grace Chin.
The matter-of-fact statement is a tell to her stoicism. Her fingertips trace across her daughter’s forehead to put her fringe back in place — done with an unselfconscious ease only a mother can have.
The first thing that grabs your attention about Madam Chin is her eyes — they have a strong, steely gaze yet every so often a glisten of hope comes through.
A plaintive hope that comes from caring for someone with a terminal disease.
It was not always this way. Jane used to be fit and healthy.
She enjoyed cooking, travelling and going out with her friends for most of her teens.
That changed when she was diagnosed at 17.
Jane suffers from severe muscle dystrophy and is wheelchair-bound.
Her condition means that she does not talk much. One of her doctors even dubbed her the "silent fighter".
The degenerative nature of her illness has led to the progressive deterioration of her body, affecting her kidneys, lungs and heart.
She experiences splitting headaches, vomiting, loss of appetite, seizures and strokes on a regular basis.
For her mother, Jane's condition is heartbreaking.
“I was in denial. I couldn’t accept the fact that this could happen to my daughter,” says Madam Chin.
Why me? Why my child?
Madam Chin says Jane was healthy and active in her adolescence. There was no indication that anything was amiss.
However, early signs of trouble showed in 2004 when Jane abruptly lost her hearing. She was 15 and in Secondary 3.
Despite this, she was able to overcome her disability and sat for her O-level examinations the following year.
Her results secured her a place to study Applied Food Sciences and Nutrition at Temasek Polytechnic.
During a mandatory pre-enrolment health screening by the polytechnic, she was alerted to abnormal amounts of protein in her urine.
A series of tests followed, revealing a prognosis of suspected kidney failure.
Then a muscle biopsy confirmed the presence of MELAS.
From that point, the family’s life was turned on its head.
The unpredictable nature of her daughter’s illness means that Madam Chin can never let her guard down.
I think what’s more painful than seeing her in this condition is not knowing when things will take a turn for the worst.
Apart from being a full-time housewife and caregiver, Madam Chin is also her daughter’s closest friend and treasured confidant.
From accompanying her daughter to weekly dialysis sessions and doctor’s appointments to administering hourly medication and keeping vigil by her bedside at night, Madam Chin tirelessly ensures all her daughter’s needs are met.
Whether it’s watching the latest Korean dramas or trying out new recipes together at home, mother and daughter share an inseparable bond.
Of the many things that Jane misses, she misses the company of friends most of all.
The MELAS has made every word a struggle for Jane to pronounce, each one taking a whole breath to enunciate.
“In the past, my close friends and classmates would come visit me whenever they could,” she says before pausing to regain her strength.
“But everyone is so caught up with life these days and most of them are working or married, so I hardly see them.”
The self-confessed travel fanatic says her condition prevents her from doing things most of us take for granted.
Some days, it can be a little tough when I see friends living their lives travelling and shopping while I’m bound by a wheelchair.
A playful smile emerges, similar to the one usually enjoyed by her mother.
“But,” she says, “life goes on”.
