On Saturday, November 16th at 11:25 am, the episode ‘Nanum 0700 – Father’s Last Request to Heaven’ will be broadcast on EBS1TV.
A 21-year-old young man suffering from ‘charge syndrome’, a rare disease that leaves him unable to see or hear.
Height 135cm, weight 21kg. Twenty-year-old Kim Si-on, who has a small body, suffers from ‘Charge Syndrome’, a rare disease that causes problems in various organs, including the eyes, nose, ears, heart, and brain, due to abnormalities that appeared during fetal life. Because of this, he cannot see, hear, or speak, making it difficult to live his daily life alone. Additionally, my ankles and spine have become severely warped recently, making it difficult to sit. Because of this, Zion’s mother, Jaesuk (57), who is taking care of him alone, is so worried that she has trouble sleeping these days.
At one time, Mr. Zion could take a few steps by holding his hand. But now even that is impossible, so even when going from the room to the bathroom, I have to always be carried in the arms of my mother, Jae-suk. Every time she sees her son getting weaker, her heart breaks, but she has no time to be sad and barely endures each day for her sick son.
My father was more family-oriented than anyone else…
The last request from my father who passed away after a battle with cancer…
Zion’s father passed away 12 years ago when Zion was nine years old due to a sudden diagnosis of terminal pancreatic cancer. The father, who cared for and cared for his son Sion so much that people around him recognized him as a ’family-oriented father’, was very worried about his son even while he was fighting cancer and even at the moment of his death. Perhaps that’s why he was more upset than anyone else about his cruel fate. On his deathbed, he passed away without being able to close his eyes.
Since then, the mother has quietly fulfilled the role of the head of the family, filling the void left by the father, and has been trying to protect her son, Sion, for 12 years. This is because the father’s last request was, ‘Please take good care of your son.’
Mr. Sion is overcoming dangerous challenges every day. Because half of the brain is missing, the swallowing function is weak, making it difficult to eat a meal or drink a glass of water. For this reason, mother Jaesook always chops all the food into small pieces and grinds it in a blender to make porridge to feed Zion, and gives him water using a syringe. There is so much to take care of from start to finish, so mother Jae-suk has no time to catch her breath even for a single day, and the days are becoming more and more difficult.
Spine deformation due to Charge syndrome.
Please send your love so that Shion can get surgery as soon as possible.
Mr. Sion’s spine is severely curved even with the naked eye, and as a result of a recent examination at the hospital, Mr. Sion was diagnosed with very severe ‘scoliosis’, which is a condition in which the spine is distorted. If left as is, the organs in the body may be pressed to one side and not function properly, and in the worst case, paralysis may occur, so surgery is urgently needed. However, mother Jae-sook’s worries are growing as there is no way to raise money for the surgery right away. The anxious mother is trying to help pay for the surgery by working at a supermarket while Shion is in the welfare center. However, since I have to take care of Zion alone, I cannot work for long hours.
Jae-sook, a mother who has to take care of her sick son and take care of all of her livelihood on her own… When I get tired of the arduous daily life, the person who always comes to mind… is my husband, who left first. It’s been 12 years of running for my son without anyone to rely on, but the weight of life is not getting any better. We ask for your interest and love so that mother Jae-sook can keep her husband’s last request and that Shi-on’s surgery expenses can be raised.
EBS’ representative social contribution program that supports neighbors in need by collecting donations of 3,000 won per currency. . To be broadcast at 11:25 a.m. on Saturday, November 16, 2024 In the ‘Father’s Last Request to Heaven’ episode, we tell the story of Zion, a 21-year-old son suffering from Charge Syndrome, and Jaesook, a mother who is caring for her sick son alone.
Economy Queen Reporter Park Yu-mi Photo EBS ‘Nanum 0700’
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How can communities better support families caring for children with rare genetic disorders like Charge Syndrome?
Interview: The Impact of Charge Syndrome on Families and Society
Time.news Editor (Ethan Lee): Welcome, Dr. Min-seok Lee, a leading pediatrician and researcher specializing in rare genetic disorders. We appreciate you taking the time to talk with us today about the heartbreaking story of Kim Si-on, a young man affected by Charge Syndrome, as presented in the upcoming episode of EBS1TV’s ‘Nanum 0700’. Can you briefly explain what Charge Syndrome is and how it affects individuals like Si-on?
Dr. Min-seok Lee: Thank you for having me, Ethan. Charge Syndrome is indeed a rare genetic disorder that can impact multiple organ systems. The acronym CHARGE stands for a series of characteristics: Coloboma of the eye, Heart defects, Atresia of the choanae, Retarded growth and development, Genitourinary abnormalities, and Ear abnormalities leading to deafness. In Si-on’s case, he faces profound challenges, including blindness, deafness, and difficulty with motor functions, which are common manifestations of this syndrome.
Ethan Lee: It’s quite tragic to learn about the difficulties faced by individuals like Si-on. His mother, Jae-suk, has taken on the immense responsibility of his care alone since the passing of his father. How does caregiving for a child with such complex needs affect mental health and well-being, especially for a single parent?
Dr. Min-seok Lee: Caregiving, especially in challenging scenarios like Jae-suk’s, can lead to significant emotional and physical strain. Single parents often experience feelings of isolation, anxiety, and depression due to the relentless demands of care. Jae-suk’s situation highlights the importance of support networks – not just for the disabled individual but also for their caregivers. Emotional fatigue can result from the continuous worry about the child’s health and future, similar to what we see with Jae-suk.
Ethan Lee: You’ve touched upon some crucial points. The article also describes Jae-suk’s struggle to meet the daily needs of Si-on, from preparing food to ensuring medication. What resources or support systems are typically available to parents like Jae-suk in South Korea?
Dr. Min-seok Lee: There are various resources, including community support groups and non-profit organizations focused on helping families dealing with disabilities. The South Korean government has made strides in providing financial support and healthcare benefits for families in similar situations, but there are still gaps. Accessibility to specialized care, emotional support, and respite services is crucial. Society as a whole needs to become more aware of the challenges faced by caregivers to foster a more inclusive environment.
Ethan Lee: That’s an important point. Si-on’s father made a touching last request for Jae-suk to care for him, which adds a poignant layer to their story. How do familial expectations and cultural influences play a role in caregiving within South Korea?
Dr. Min-seok Lee: Family bonds and filial piety are deeply ingrained in Korean culture, creating strong expectations for caregiving. This often results in caregivers feeling a heightened sense of duty. However, it can also lead to guilt if they feel they are not fulfilling these expectations adequately. Balancing cultural responsibility with personal well-being is a delicate tightrope walk for many families like Jae-suk and Si-on.
Ethan Lee: It’s truly heartrending. Lastly, how can the community support families facing such hardships? What actions can individuals take to contribute meaningfully?
Dr. Min-seok Lee: Community support can take many forms, such as volunteering at local organizations that support families or simply offering help to a neighbor in need. Awareness is key; we should encourage open conversations about disabilities and caregiving challenges to foster empathy and understanding. Fundraising for medical treatments or even emotional support initiatives can also make a significant impact on families like Jae-suk’s.
Ethan Lee: Thank you, Dr. Lee, for your insights today. Si-on’s story is a powerful reminder of the resilience of families facing hardship and the empathy and action we, as a society, can take to support them.
Dr. Min-seok Lee: Thank you, Ethan. It’s our collective responsibility to advocate for change and support those in need.