Electricity Bills Crushing Lives: Children with Rare Diseases Can't Even Afford to Breathe
- Power to Change Taiwan
- Dec 25, 2018
- 3 min read
Xiao Qi (anonymous) is a young girl suffering from spinal muscular atrophy, and she lives with her mother and older sister in a small, rented public housing apartment. The living room is filled with life-sustaining equipment for Xiao Qi. For her, electricity is not just a basic necessity, but a lifeline that connects her to the world.
"When she sleeps, the oxygen machine has to run all night, which consumes a lot of power. The ventilator also needs to be on, and the humidifier uses electricity too. Each breathing device is plugged into three outlets at once. It runs from bedtime until morning, and even the air mattress requires electricity to inflate and to maintain airflow," Xiao Qi's mother explained cheerfully while pouring water for her daughter, though her eyes revealed a deep sense of sorrow for her little girl.
To take care of her daughter, Xiao Qi's mother can't work full-time and only handles occasional design projects from home. Her income is irregular, but the electricity bills never decrease.
Due to her condition, there are no medications available for Xiao Qi. Therefore, maintaining a better quality of life for her is essential.
"In winter, the heater must be on, and in summer, the air conditioner has to be on 24 hours a day," said Xiao Qi's mother. Due to muscle atrophy affecting her nerves, Xiao Qi is unable to regulate her body temperature on her own. The use of air conditioning and heating must be continuous, and she also needs regular check-ups to monitor her condition. However, doctors don't want the patient to be frequently exposed to the hospital environment, so they require the life-sustaining equipment to be available at home. This allows for nearby care and reduces the risk of infections, helping conserve the patient's energy. "In the summer, after subsidies, the electricity bill is still as high as 3,000 to 4,000 NT dollars," Xiao Qi’s mother said helplessly.
To save electricity, she removes light bulbs from the rooms to add them to the living room, leaving the room lights dimmer than usual, thinking it's okay as long as it's a bit darker.
"Electricity bills are so high in the summer that we have to cut down on living expenses," said Xiao Qi's mother. To save electricity, she unplugs the air conditioning when Xiao Qi is at school and doesn't use heating or cooling. Since the medical equipment’s power usage is fixed, she has to reduce electricity use elsewhere.
Although Xiao Qi’s mother knows that energy-efficient appliances are better, she cannot afford to invest in them, making it hard to think about long-term savings.
Looking around Xiao Qi’s home, most of the furniture is old, with visible signs of wear and tear, and the appliances, while still functional, consume many times more electricity than current models. "The refrigerator is secondhand, probably used for over ten years, but to ask me to spend 10 to 20 thousand NT dollars on a new one, I just can't afford it," Xiao Qi’s mother laughs sadly. She’s been considering replacing the refrigerator for two years, and the air conditioner has also been in use for over a decade. Even though using appliances for too long may raise safety concerns, managing daily expenses is hard enough, so she can only make do with what she has.
The pressure Xiao Qi’s mother faces in caring for her daughter is evident, subtly conveyed in her words and the loving gaze she directs at Xiao Qi. This emotional weight is felt by the interviewer and photographer.
Because of your participation in the "Lighting Infinite Hope" initiative, not only has it helped reduce carbon emissions in Taiwan, but it has also brightened a family's life. This light illuminates children studying in 7-11 convenience stores, elderly people flipping through old photo albums alone, and family members gazing at loved ones in bed, filled with longing and care.
We invite you to continue working with us to solve the issue of energy poverty. By switching your paper bill to an electronic bill, your bank will redirect the cost of printing and mailing physical bills to support vulnerable families facing energy challenges, reducing waste and creating the most significant social impact.
