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Ailing Child’s Father on 1,500km Trek

Posted November. 08, 2006 03:01,   

한국어

He is a father and does not stop walking. He continues to walk today. From Gangwon Province to Daegu, from Daegu to Busan, from Busan to Chungcheong Province and finally to Seoul. As of Tuesday, 26 days have passed since he began his 1,500km journey.

His badly blistered feet have gotten numb already. He takes painkillers as if they are vitamin tablets. However, the man says he is ok. He believes that this is a way to share the pain of his son who is suffering from a rare intractable disease.

Park Eun-chong and his father Park Ji-hoon shaved their heads on the 8th of last month. He began his endless march titled “In the Name of Father” on 12th of October.

The “In the Name of Father” is a long nationwide march Ji-hoon has been on with an aim to help children suffering from rare intractable diseases. Park Bong-jin, who calls himself a father of 10 children although not married, has also participated in the journey. 32-year old Park Bong-jin is also the president of “Yeouldol,” a support group for patients suffering from rare intractable diseases.

Bong-jin who is also suffering from congenital night blindness, an intractable disease, has been helping 10 children with intractable diseases since 2002.

Eun-chong is suffering from a rare disease called Sturge-Weber syndrome. Ji-hoon still vividly remembers the day when his son was born. “The doctor told me to send him to a large hospital as soon as possible. All the veins in his body were burst. He was completely red all over the body. I ran and ran (to save his life) but I do not remember what happened next.”

Ji-hoon could finally hear the name of his son’s disease after six-days of hospitalization. It was a very unfamiliar name. The doctor said he would probably die within six months and he should be prepared for his son’s death. The doctor said it was a brain-related disease whose causes and cures are unknown,

“Veins under the skin burst and red spots appear all over the body. It becomes very difficult to breathe because of severe convulsions. The brain gradually becomes hard and he or she can not grow like other ordinary children.”

The doctor predicted their worst nightmare and it soon became true. They could not see a glimmer of hope.

While Eun-chong received countless operations and treatments and ceaselessly visited hospitals, pharmacies and rehabilitation centers, debts started to mount. His parents did their best day and night, but it was hopeless. Ji-hoon became a credit defaulter and got fired from the work.

“A rare intractable disease is like running a long, lonely marathon,” Ji-hoon said. If someone suffers from an intractable disease, he or she should continue to receive treatment in order to stop the advancement of the illness, though it is impossible to completely cure the disease and not covered by insurance.”

However, Ji-hoon could not give up. Although Eun-chong was diagnosed to live less than six months, he has lived over three years. And when Ji-hoon saw his son showing great enthusiasm in rehabilitation treatment, he decided to make his grand march.

“I always wanted to do this. I have a longer way to go than I have walked so far. I wanted to make a firm resolution. I wanted to walk together hand in hand with Eun-chong when he grows up.”

Although he could not take hold of his son’s hand, he commenced the march, imagining he is together with him, wearing a white t-shirt on which a picture of Eun-chong is printed. He looks at the picture on his shirt several hundred times a day while continuing his 50-day journey. Although the cold wind of late autumn freezes his eyes, Ji-hoon and Bong-jin still continues their march today. They have passed Buyeo and are now heading towards Seoul.

When they arrive in Seoul, they plan request a talk with Yoo Si-min, Minister of Health and Welfare, and to deliver a petition from parents who have rare intractable disease children, along with one million signatures gathered online (www.papalove.or.kr) and offline.

There are already numerous replies on the message boards of the website that Ji-hoon has made.

“It’s difficult for a man, but not a father.”

“I am a mother of a child who has also a rare intractable disease. Thank you. I really appreciate it.”

“Keep up the good work. My child in heaven will also be praying for you.”



imsun@donga.com