It’s difficult to imagine what it would feel like to be stuck in a baby’s body for 17 years. But that’s exactly what Pei Shan Teo from Singapore has had to live with. When Pei Shan was born, doctors found that her limbs were much shorter than that of a normal baby. After repeated examinations, she remains officially undiagnosed although her medical charts cite Mucopolysaccharidosis Type III, a congenital disorder affecting the bones, organs and central nervous system. Whether from this disease or something unknown, Pei Shan is unique: She doesn’t grow like other children. Rather, her mind has been imprisoned in a body which has been frozen in time.
Pei Shan’s parents still remember how excited and joyful they were while preparing for the arrival of their baby. They read books on parenting, absorbed all the latest child-rearing know how and even subscribed a child care journal. They felt ready to record every minute of their child’s growth. However, Pei Shan stopped growing after three months. She then developed one health problem after another. "Each time we thought we’d overcome one hurdle, another blow would hit us and we would have to go through the roller-coaster ride of suffering and emotions," her father Qi Kuan Teo recalled.
Pei Shan still has baby fat on her face and limbs and has to wear a diaper; in many respects, she's still a baby even though many years have passed by. Because her lung capacity is limited, she also has to wear an oxygen mask at all times. "Our happiness turned to despair," Mr. Teo said. "Sometimes, I wonder, why us? What did I do in my previous life that I now have to repay that debt? In the beginning, we focused only on trying to overcome the situation; there was no time to think of anything else."
"I have gone to bed wishing that I’ll never wake up the next morning, thinking that it would be so much better that way," Mr. Teo confesses, revealing the immense burden he has carried. "But I quickly remind myself that it would be so irresponsible. My wife and child will be left to care for themselves." Due to Pei Shan's special condition, her mother quit her job as a bank teller in order to devote herself to Pei Shan's care. However, with the family's only income then coming from Mr. Teo's job as a taxi driver, the huge medical bills inevitably became a serious financial hardship and almost caused them to go bankrupt.
Her mother, Siew Cheng Chew, said that she has had to become very sensitive to any sound because she has to make sure that Pei Shan's oxygen mask is continually functioning properly. "I can hear the sound from the anklet that she wears even when I am in the toilet or kitchen," she said. "Or she’d go, 'mee' (short for mummy), and I can hear her calling for me. She makes a movement, I’d be able to hear it. Even if it’s very noisy."
When Pei Shan was two, her parents tried to enroll her in a special school, but the situation was clearly more difficult than they had thought. She easily contracted infections when she was outside. “Once, her oxygen level dropped to nearly zero and she turned totally blue. We almost lost her then,” Mr. Teo recalled, choking back tears.
What's more, the strange looks from others in public was even more unbearable. “Some parents would pull their children away, like my daughter is a freak," Ms. Chew lamented.
Notwithstanding her many challenges, this brave girl has been fighting against her illness with a tremendous spirit for 17 years. She loves drawing and playing piano. "Sometimes, she’d ask us why she looks different from the other children, and we always tell her that's because she is special and unique. She is a happy child and little things like watching her favourite show or eating her favourite food make her day," Mr. Teo enthused. Last year, she achieved a life dream: performing piano in a charity concert.
Unfortunately, Pei Shan’s condition deteriorated dramatically in July. After receiving morphine injections as an emergency treatment for shortness of breath, she passed away peacefully in the hospital with her parents by her side.
Though Pei Shan’s life was full of challenges, she was always optimistic and never gave up. Her wishes for a lively funeral in the theme of her favorite cartoon character—Hello Kitty's bunny pal My Melody—meant that those celebrating her life were able to do so in an atmosphere that fully honored her memory. A touching way to remember the girl who always found a way to enjoy life despite her limitations.