04 | Our Caregiver
Kelly Lee
About Kelly Lee
Kelly is a single mother of a 14 year old 1p36 deletion syndrome patient called Edwin and his younger brother who has ADHD.
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Struggling with Waiting Times
To Kelly and Edwin, who are frequent visitors to hospitals, having to wait to see a doctor often proves to be a huge challenge. As a 1p36 patient, Edwin's patience is extremely limited-- he often throws tantrums, bangs on tables and chairs, and self harms when forced to wait. That’s why after each visit to the doctor, Edwin and Kelly often go home covered in bruises and tears.
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According to Kelly, literally all doctors have no knowledge of the 1p36 disease, forcing Kelly to spend most of the doctor’s consultation time explaining the disease her child is suffering from. “My only advice for medical students,” says a visibly exasperated Kelly, “would be to study and read more.”
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According to Kelly, literally all doctors have no knowledge of the 1p36 disease, forcing Kelly to spend most of the doctor’s consultation time explaining the disease her child is suffering from. “My only advice for medical students,” says a visibly exasperated Kelly, “would be to study and read more.”
About 1p36 deletion syndrome
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Cause
Genetic deletion of the distal light band on the short arm (p) of chromosome 1
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Inheritance
95% of disease is caused by a random chromosomal mutation during meiosis or in early fetal development
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Prevalence
1 in 5000 to 1 in 10,000 (0.01% to 0.02%) of live births
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Symptoms
Severe intellectual disability and delayed development during childhood, such as speaking difficulties, behavioural problems and self-harm behaviour; physical symptoms include small head, distinct facial features and visual problems
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Effect
1p36 children are not able to develop normally and live a normal life
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Treatment
No known cure for 1p36 syndrome; treatment used to control symptoms of the disease such as seizures
“Once, a Social Welfare officer told me I should send my son to a long-term hostel instead of wasting effort to take care of him myself. Those words were enough to cause me to break down in tears.”
Excessive Bureaucracy
One of Kelly’s biggest barriers is the Social Welfare Department, which forces Kelly to navigate endless bureaucracy just to obtain funding for the most basic necessities such as diapers and wall padding. “It always takes days of arguing for officials to approve my requests, even when they are essential items like wall padding needed to protect Ho San from himself.” says Kelly.
Once, a senior officer told Kelly the expense of raising Edwin is unaffordable, and advising her instead to send her child to a long-term hostel to “deal with him”, which caused Kelly to break down in tears. Kelly says it always takes days of arguing and justification for the government officials to approve her requests, causing needless headache and inconvenience to her life.
Even so, Kelly still finds some bright spots living in Hong Kong. Kelly recounts how the vast majority of Hong Kongers are exceedingly nice to Edwin, such as the ladies at the market who always greet him with a smile.
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Future Aspirations
Kelly does not wish for much for the future—she does not want Edwin to live a long life, instead only wishing for her son to be happy. Regarding COVID, Kellys says, “I am not worried about Edwin losing his life due to COVID, since that means he will be able to go to heaven sooner. The only thing that distresses me is the thought of Edwin being restrained in the hospital and suffering physically and mentally as a result.”
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“I do not understand why so many doctors do not listen to what mothers have to say. Doctors only examine our children for 5 minutes; it is the parents who stay with the children 24/7”