Meet 15 year-old Amanda. She may look like any other teenager on the street but here’s why her story is truly an extraordinary one.
This article is written by our volunteer writer, Mona Thyagarajan, MSW
At first glance, Amanda is like any other 15 year-old girl. She studies, she relaxes with her friends, watches Chinese dramas to de-stress, plays the piano, worries about her grades and her life follows the usual routine of schoolwork, time with friends and family.
But there is one aspect of the cheerful teenager’s life that is very different from her peers – Amanda’s routine involves her 12 year-old sister, Amelia. Amelia has a rare disease, which remains unknown despite extensive tests, and has regular epileptic episodes, sleep apnea, is frequently hospitalized for infections, too weak to walk and is non-responsive and cognitively impaired. And Amanda is involved in every aspect of Amelia’s life, making choices that most teenagers don’t face.
Few teenagers would choose to leave mainstream schooling and be homeschooled, in order to be more involved in her sister’s care. Amanda helps to care for her sister’s physical needs, such as helping with feeding, and dedicates a few hours each day to her sister – either reading to her, watching PJ Mask cartoons with her, taking her to the park or doing finger painting with her.
These choices are driven by love for her sister, regardless of her condition. That has been a journey, she says, with maturity beyond her years. As a primary schooler, she didn’t understand why Amelia was like that and didn’t tell her classmates she had a sibling because she was fearful of judgment. But by secondary school, she felt her friends had the maturity not to judge and felt more comfortable sharing. It was hard at first, but now she feels no fear or shame talking to others about her sibling with special needs.
Her choices have also had an impact on her. Moving to homeschooling meant a whole new group of friends and a different environment, and it was tough to adapt. Now, almost a year later, she has made some good friends while still being in touch with her old school mates and believes homeschooling has helped her enjoy learning more.
“I used to hate studying since young.” She says with a grin, “Now, I have found my interest in studies and my marks are better. I am also motivated by my dream – I want to go to NUS and become a pediatric neurologist, so I can help people like Amelia.”
Amanda has a close relationship with her sister. As Amelia is nonverbal, she knows Amelia’s facial expressions and knows that she sighs when she’s angry and is quiet when she wants something. She is able to interpret the other ways Amelia communicates without words, through blinking or swallowing her saliva. Her efforts to connect with her sister is something that their mother, Wendy, says she has been touched by.
Amanda picking out a balloon for her sister after our interview
“It would be easy to say ‘I spend time with my sister’ but really quite tough to interact with someone who doesn’t respond. I am encouraged by how she loves her sister, by her patience, by how she insists communication is important. It has an impact on Amelia, on all of us.” Wendy says.
Amanda speaks passionately and feels for others like her, children who have siblings with a rare disease, who might be struggling to deal with their experience. She wants to reach out to them, to reassure, support and encourage them and show them that they are not alone and there is someone who understands what they are going through.
“What I would say to others like me, I would encourage them to stay motivated, to know that every day is precious and to focus on making memories as that’s the most important.”
Wise words from someone only in her teens. But this is Amanda – wise beyond her years, determined yet caring and cheerful. While life circumstances may have defined somethings, Amanda is the one defining herself. And that’s what makes her extraordinary.
Special thanks to Rare Disorders Society (Singapore) for introducing us to this inspiring teen.