X
theAsianparent Logo
theAsianparent Logo
Product GuideSign in
  • Awards
    • Parents' Choice Awards 2023
  • Pregnancy
    • Due date calculator
    • I'm pregnant
    • Trying To Conceive
    • Labour
    • After birth
    • Baby loss
  • Parenting
    • Parent's Guide
    • Relationship & Sex
  • Child
    • Newborn
    • Baby
    • Toddler
    • Pre-Schooler
    • Kid
    • Pre-Teen & Teen
  • Feeding & Nutrition
    • Diseases-Injuries
    • Breastfeeding & Formula
    • Meal Planner
    • Health
    • Allergies & Conditions
    • Vaccinations
  • Education
    • Pre-School
    • Primary School
    • Secondary School
    • Primary School Directory
  • Lifestyle
    • Money
    • Travel & Leisure
    • Fashion
    • Home
    • Fitness
    • Contests & promotions
  • News
    • International
    • Health
    • Celebrity
    • Singapore
  • TAP Recommends
  • Shopping
  • Press Releases
  • Project Sidekicks
  • Community
  • Advertise With Us
  • Contact Us
  • Become A Contributor
  • VIP

32-Year-Old Singaporean with ALS Dies 8 Years After Diagnosis; Parents Converted Bedroom into 'ICU' to Care For Her

4 Apr, 2022

At the age of 24, Carolyn Chan felt unwell, developed muscle weakness and had difficulty swallowing and talking. She lost 15kg within a year, and was later diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS.

Within a year of her diagnosis, she was paralysed. But with dedicated round-the-clock care by her parents, who even converted their room at home into a makeshift ‘intensive care unit’ (ICU), they got to spend another eight years with their daughter.

After the diagnosis, Kwek flew to Canada for three months to be with her daughter. They consulted more doctors back in Singapore when they returned but still faced with the sobering reality of the incurable condition.

Despite the devastating prognosis, Kwek said Chan remained optimistic and co-operated on treatment plans. “She never once complained,” said Kwek.

32-Year-Old Singaporean with ALS Dies 8 Years After Diagnosis; Parents Converted Bedroom into ICU to Care For Her

Chan sitting on a wheelchair when outside. PHOTO: Screengrab from Shin Min Daily News

While Chan could still take care of herself initially, she gradually lost the ability to breathe and eat on her own and became bedridden.

Not wanting their daughter to spend the rest of her life in a hospital, Kwek and her husband decided to care for her at home.

The couple converted their bedroom into a makeshift ICU and bought equipment such as a ventilator, oxygen concentrator and a hospital bed, so that they could be beside her as she slept.

The couple live with their two other daughters at home and also rely on a live-in helper to help care for Chan, as she required attention every 15 minutes.

As Chan’s mental capacities remained intact, the family would bring her out for a movie or to enjoy the outdoors whenever her physical condition allowed.

Before every trip out however, they would have to make sure to bring the necessary medical equipment. Chan would also have to be lifted out of her bed by a hoist while being assisted by three others.

Chan’s condition gradually deteriorated over the years and she died peacefully at home last month.

Kwek described how even though Chan could not speak or raise her hand, she could still communicate through electronic devices. Through this method, she was able to wish them goodnight and say “I love you”.

But in the later stages when her eye muscles degenerated and there were times she could not even open her eyelids, Chan had to rely on moving her eyeballs left and right to signal her intention. This continued for several years.

“Seeing our daughter suffer was painful, but we had to be strong and not give up hope,” Kwek shared, adding that Chan was “not able to talk or express her pain”.

“We would only realise she was uncomfortable when she teared up. It upset us to see that, but if we were to show our sadness she would be upset too, so we had to remain strong and take care of her to the best of our ability.”

Kwek hopes to raise people’s awareness of the debilitating condition by sharing her daughter’s story, and that it would inspire others not to lose hope.

She shared that if expectations are well-managed and adequate assistance is provided, prolonging the lives of ALS patients is possible.

“The disease has no effect on patients’ cognitive and sensory abilities, so they may experience persistent discomfort from the pain and itch. They can also feel a sense of guilt towards their caregivers or for the financial liabilities their condition brings and be depressed or distressed,” said Kwek.

Partner Stories
4 Good Toilet Hygiene Habits for Kids to Have Early in Life
4 Good Toilet Hygiene Habits for Kids to Have Early in Life
Flu in Singapore: Is Your Family Protected?
Flu in Singapore: Is Your Family Protected?
Celebrity Dad Mark Lee Shares the 3 P's of Raising School Going Children - Parenting Tips, PSLE Preparation & Protecting Your Child’s Eyesight!
Celebrity Dad Mark Lee Shares the 3 P's of Raising School Going Children - Parenting Tips, PSLE Preparation & Protecting Your Child’s Eyesight!
NTUC First Campus (NFC) Expands Child Support Model to Include Support for Mental Well-being
NTUC First Campus (NFC) Expands Child Support Model to Include Support for Mental Well-being

“My daughter was always optimistic despite her condition. We were all by her side when she passed and she went peacefully. I believe she is in another wonderful place now,” Kwek told the Chinese evening daily.

This article was first published on AsiaOne and republished on theAsianparent with permission.

ALSO READ:

38-year-old who Lost 6 Babies to the Same Rare Condition Bravely Shares Her Story

Multisystem Inflammatory Syndrome After COVID In Children Is Rare But Makes The Body Fight Itself

5 Helpful and Effective Ways to De-Stress as a Parent

Got a parenting concern? Read articles or ask away and get instant answers on our app. Download theAsianparent Community on iOS or Android now!

img
Written by

asiaone

  • Home
  • /
  • News
  • /
  • 32-Year-Old Singaporean with ALS Dies 8 Years After Diagnosis; Parents Converted Bedroom into 'ICU' to Care For Her
Share:
  • ‘They Never Surveyed Me’: Singapore Named Happiest Country in Asia, Several Netizens Disagree

    ‘They Never Surveyed Me’: Singapore Named Happiest Country in Asia, Several Netizens Disagree

  • 10 Immunity-boosting Foods To Help Your Child Fight Influenza And Fever

    10 Immunity-boosting Foods To Help Your Child Fight Influenza And Fever

  • What Is Autism Spectrum Disorder? Does Your Child Have It?

    What Is Autism Spectrum Disorder? Does Your Child Have It?

  • ‘They Never Surveyed Me’: Singapore Named Happiest Country in Asia, Several Netizens Disagree

    ‘They Never Surveyed Me’: Singapore Named Happiest Country in Asia, Several Netizens Disagree

  • 10 Immunity-boosting Foods To Help Your Child Fight Influenza And Fever

    10 Immunity-boosting Foods To Help Your Child Fight Influenza And Fever

  • What Is Autism Spectrum Disorder? Does Your Child Have It?

    What Is Autism Spectrum Disorder? Does Your Child Have It?

Get advice on your pregnancy and growing baby. Sign up for our newsletter
  • Pregnancy
    • Baby
    • Education
    • Events
    • Allergies & Conditions
  • Family Occasions
    • Breastfeeding & Formula
    • Child Safety
    • Health
    • Diseases-Injuries
  • Lifestyle
    • Home
    • Money
    • Feeding & Nutrition
    • Diet & Weightloss
  • Normal Delivery
    • Cesarean Delivery
    • Behaviour
    • Secondary School
    • Formula Feeding
  • Ages & Stages
    • Latching & Concerns
    • Festivals & Holidays
    • Education
    • Pre-teen & Teen
  • More
    • TAP Community
    • Advertise With Us
    • Contact Us
    • Become a Contributor


  • Singapore flag Singapore
  • Thailand flag Thailand
  • Indonesia flag Indonesia
  • Philippines flag Philippines
  • Malaysia flag Malaysia
  • Sri-Lanka flag Sri Lanka
  • India flag India
  • Vietnam flag Vietnam
  • Australia flag Australia
  • Japan flag Japan
  • Nigeria flag Nigeria
  • Kenya flag Kenya
© Copyright theAsianparent 2023. All rights reserved
About Us|Team|Privacy Policy|Terms of Use |Sitemap HTML
  • Tools
  • Articles
  • Feed
  • Poll

We use cookies to ensure you get the best experience. Learn MoreOk, Got it

We use cookies to ensure you get the best experience. Learn MoreOk, Got it

theAsianparent heart icon
We’d like to send you notifications for the latest news and updates on baby care and health.