Sia Jin Zhu was diagnosed with congenital muscular dystrophy, a condition present at birth that leads to the gradual weakening and degeneration of muscles. Despite having to stay at home because of it, the 23-year-old finds meaning through her love for writing and voluntary work. Here, Jin Zhu shares her story.
Accepting my Disability
Life has never always been easy for someone who has a terminal illness from a very young age. I was diagnosed with congenital muscular dystrophy when I was just three months old. It is a genetic disorder which causes the muscles to debilitate over the years, leading to a slew of complications, such as the curving of the spine sideways, difficulty in swallowing and articulation of speech, as well as weakening of the lungs and heart muscles.
My parents were devastated and disheartened when the doctor broke the news to them. They had never heard of this illness and were at loss as to how they were going to take care of me.
Even though they knew that this condition is incurable, they still tried all sorts of treatment for me, hoping for a miracle to happen and to prove the doctors wrong.
You name it, we tried it. From physiotherapy, to traditional Chinese medicine to spiritual healing. None worked.
My parents eventually accepted the fact and life went on.
I didn’t begin using a wheelchair until I was 6 years old. Previously, I attended nursery in a baby pram but I could scoot around freely on the floor at home. I didn’t like being confined to a wheelchair because it made me feel like a person with special needs.
I was often chided by the teachers in kindergarten, as I was always slow and late in submitting my work. My parents were illiterate, therefore, I had no one to turn to for help in my schoolwork.
My Sister, My Guardian Angel
Fortunately, my elder sister Sharon, stepped in to coach me. Since then, she has taken on the role of my full-time caregiver, looking out for me and ensuring that I lead a quality life.
Although my sister and I are 14 years apart, we share a very close bond, so close that many people would mistake her for being my mum.
A Chance Meeting with SPD
When I was 7 years old, my sister came across an article on SPD. She called immediately to enquire whether I am eligible for its services, and that was how I met my social worker, Ms Angela Chung.
When I first met Ms Chung, she welcomed me with open arms and I could sense her willingness to help. She really did her best to serve every client under her charge.
In the past, I would go for regular therapy sessions at SPD at a subsidised rate. My therapists would update her regularly about my condition and they would assess if I require any assistive device or equipment to enhance my daily life.
Going for therapy sessions was something I dreaded the most. Every week, I had to endure the excruciating and agonising pain while my therapist carried out stretching exercises for me. I felt very drained after every session.
What kept me motivated was the therapists at SPD. They would encourage me to try out new exercise equipment to hone my motor skills and improve muscle strength. This made therapy more fun and engaging.
A Turning Point
My condition has deteriorated progressively and today, I have to rely on medical equipment and devices to aid my daily living, such as a customised tilt-and-recline wheelchair with extra support, customised height adjustable table, electrical hospital bed, commode chair, magic wand keyboard and pedal exerciser, etc., just to name a few.
The cost of every device is quite substantial for my family, considering my parents are low-wage workers and my sister is unemployed. Thankfully with the help of Ms Chung, many of these equipment were fully sponsored by kind donors and SPD. This has greatly eased my family’s financial burden.
Some 10 years ago, life presented more challenges for me and my sister when my family ran into a very difficult situation. Our lives hit rock bottom.
It was really tough on my sister as she had to shoulder more responsibilities caring for me and I think that took a toll on her emotionally and physically. When Ms Chung learnt of our situation, she came forward to provide counselling and emotional support. It was indeed a morale boost for my sister and I.
We appreciate SPD taking the extra mile to assist us in every way it has been able to, such as providing monthly grocery shopping vouchers and annual bursary to lessen our burden.
Writing and Helping Others
I passed my GCE “O” levels with flying colours and could enrol in a polytechnic, but due to my ailing health, I withdrew from school and stayed home most of the time. However, that didn’t douse my passion for writing and helping the community.
I was very happy to help crochet and contribute some beanies to the underprivileged in other countries, such as deaf students in Nepal, the homeless in New York City and the orphans residing in the remote areas of Myanmar.
I also kept myself occupied by helping local parents and students to solve mathematical questions via Facebook for free, as I fully understand that not every parent is able to afford the hefty tuition fees for their kids.
Occasionally, I crochet baskets for sale at charity events to raise funds and which, I could also present as gifts.
My sister also takes time out to volunteer at an animal welfare group every week. This serves as a form of respite for her, and at the same time, she is able to do something meaningful for the community.
A Mentor and a Friend
I am very grateful to SPD for the support that it has given me and my family all these years. We are also very moved by Ms Chung’s kind gestures, sincerity and encouragement. She is definitely a person with great sympathy and empathy. I would say that Ms Chung is the one who saw me through the hardships.
She has always been so supportive, encouraging and motivating. I wouldn’t have made it this far without her. She is definitely someone whom I wish to emulate.
She is more than a social worker to me. She is like a friend, a mentor and a benefactor. I am extremely thankful to her for bringing out the fullest potential in me. No amount of words can express my gratitude. She has taught me to be more resilient, and reminded me to persevere and be courageous.
As we progress towards a more developed society, let’s remember to be thankful to the people around us and be kind towards everyone!
Never give up on yourself and the people around you till the very last day!