The teenager chose homeschooling in order to assist


The teenager chose homeschooling in order to assist with caring for her bedridden sister. Ms. Amanda Ng switched to homeschooling five years ago when she was 14 in order to assist her parents in caring for her bedridden sister, who has a rare genetic illness.

The decision made by the older sister was solidified at that point when Amelia’s condition deteriorated to the point where the 11-year-old began to have potentially fatal episodes.

When Ms. Ng returned from school one day, she noticed her mother screaming and her assistant frantically trying to re-establish Amelia’s breathing.

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My father was attempting to get her to sit up. At the time, we had no knowledge about bagging (rescue breathing). She made it, but it truly made me uncomfortable. What am I waiting for if I know my younger sister’s life won’t be as long as others?

Amelia was intubated when she was 12 and has needed a ventilator ever since to breathe.

Ms. Ng, a self-described social butterfly who was active in the school band and school council, found the transition to homeschooling to be very challenging but she persisted.

She was one of the eight female recipients of the Singapore Patient Caregiver Award, which was given out on Wednesday at the annual Singapore Patient Action Awards virtual ceremony.

The award recognizes caregivers for their fortitude, tenacity, and unshakable commitment to providing care for another person in the face of difficulties.

Ms. Poh Ya Nee, the Star Pals (Paediatric Advanced Life Support) palliative homecare nurse for HCA Hospice who nominated Ms. Ng, said the adolescent assists her sister with all daily care tasks, including tube feeding, suctioning, and urinary catheterization, among other responsibilities.

Ms. Ng would also organize CPR during emergency situations and take part in end-of-life discussions, according to her.

Amelia was diagnosed with infantile neuroaxonal dystrophy last year when she was 15 years old, and the majority of patients with this condition do not survive past the age of 10.

The fact that I won’t be able to see my sister in my life forever presents the greatest challenge for me. There are many things I’ll never be able to do with her,” Ms. Ng added.

“I am aware of the time’s passing. The memories are what we cling to. We discuss death with her.

Ms. Ng is currently enrolled in college, her mother has a part-time job, and her father holds a senior executive position with an engineering firm.

I tell her, “You’re dying, but even after you go to heaven, our hearts will still be connected. When you’re tired, notify Jie Jie (older sister in Chinese) when you’re ready to go.”

Four moms, two of whom are in their 80s, were also beneficiaries of the patient-caregiver award this year.

The 83-year-old Madam Tan Sng Muay has been caring for her daughter since she had a major accident when she was a student 14 years prior.

The 81-year-old Madam Phat Yock Chan has been raising her daughter, who was born with Down syndrome, for the past 46 years.

Despite the fact that her daughter is currently bedridden and has just received a diagnosis of early-onset dementia, the elder woman is still able to live at home with her daughter thanks to the assistance of a community care team.

Madam Tahirah Mohamed, a 45-year-old mother, has spent the last 15 years caring for her nine children, seven of whom have special needs, such as obsessive-compulsive disorder and an autistic spectrum disorder.