Touching Stories
Ting (nickname) has twin sons diagnosed with Down syndrome, both experiencing moderate to severe disabilities. Their muscular, skeletal, and organ development are delayed, with difficulties in swallowing. The younger son, in particular, has a narrowed oesophagus, a stomach opening, and suffers from sleep apnoea, required to wear an oxygen device during his sleep.
Misfortunes compounded when Ting’s husband abandoned her and their children two years after they were born. Life's burdens and the financial responsibility for the ailing children fell solely on Ting. Watching her unaware and helpless younger son in his sleep, Ting sighed with tears in her eyes...
Fast forward to the twins being 11 years old, but their intellectual capacity is only around two and a half years old, making them unable to take care of themselves. Their lack of danger awareness demands constant and close supervision from the caregiver. Due to her sons' inability to express themselves, often crying and being restless, Ting has to carefully observe for any discomfort and patiently assist them in managing their emotions. In addition, every week, Ting has to take them to various hospital departments for follow-up appointments and specialised training...
Ting, facing emotional strain from long-term and never-ending caregiving, began experiencing emotional issues.
In 2021, Ting noticed her younger son had difficulty lifting his head. Initially misdiagnosed as a stiff neck, months of unsuccessful treatments led her to tirelessly seek medical help, despite financial constraints. The diagnosis revealed the urgent need for surgery due to "Occipital atlantoaxial rotatory dislocation." However, the high-risk surgery posed a dilemma, as anaesthesia could be perilous for her son with sleep apnoea. Yet, avoiding the surgery could lead to fatal nerve damage. Faced with this dilemma, Ting was on the verge of collapse, experiencing a recurrence of depression.
Shortly after the first surgery, Ting discovered her younger son's diminished appetite and unstable emotions. A mother's instinct led Ting to suspect that there might be an issue with her son's teeth. Deciduous teeth of children with Down syndrome typically do not fall out naturally. When permanent teeth develop, two rows of teeth may emerge, leading to inflammation. However, due to communication and intellectual limitations, most dentists are reluctant to extract teeth for young children with Down syndrome. The Department of Health's "Healthy Teeth Collaboration" program only serves intellectually disabled individuals aged 18 and above. In despair, Ting, eventually found a specialized Centre for her son's examination. The preliminary assessment indicated four teeth needed to be extracted. However, while government’s financial aid could only cover the surgical costs, anaesthesia expenses had to be borne by Ting herself.
As a result, a social worker from Tung Wah Group of Hospitals recommended Ting to apply for emergency assistance from the "TWGHs Emergency Relief Fund" to cover the anaesthesia costs. However, during the surgery, the dentist discovered that her younger son actually needed to extract 14 teeth. Unfortunately, the emergency fund could only support the treatment cost for four teeth, as per the initial application's quotation. Helpless, Ting had to tighten her belt, using her savings once again. To her surprise, a few months later, her elder son faced the same issue, bringing the exhausted mother into another round of anxiety, physical exhaustion, and mental distress.
The twins' fragile health prevents regular care centres from providing high levels of care services, and overnight care centres providing emergency care services are scarce.
Recently, Ting experienced severe stomach pain, requiring emergency hospitalisation. Despite her pain, she feared leaving her sons unattended, so she refused to be hospitalised. Later, Ting’s health greatly deteriorated, she lost her appetite and even lacked the strength to care for her sons. However, the public hospital has a waiting period until next year for surgical examinations. A private doctor suspected liver fibrosis, recommending an urgent endoscopy at a private laboratory. The cost, though, was exorbitant, and Ting could not afford it. She had no choice but to endure the pain with painkillers, facing hardship through sleepless nights.
Faced with caregiving pressures that are challenging for most people to imagine, caregivers often bear a significant mental burden and physical pain themselves. Unfortunately, with limited social resources and a shortage of space in facilities for individuals with disabilities, the current waiting time is at least 10 years... Yet, for a mother, sending her children to such facilities at their young age is akin to abandonment, leaving Ting in a dilemma. Despite the uncertain future and unforeseeable challenges, Ting still holds onto hope, grateful that she can receive assistance in the most difficult times—be it caring teachers, companions sharing information with Ting because of their similar experiences, or selfless support from social workers—they are all glimmers of light in her challenging life.
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