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“Jun-wei is my son,
he is not ugly and he is lovely!” Li-ching clings to her son when recalling
days of looking doctors around to treat her son suffering Bullous Congenital ichthyosiform erythoderma.
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Travel photo
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We are celebrating life!
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Li-ching’s son
Jun-wei suffers the rare medical problem of Bullous
Congenital ichthyosiform erythoderma commonly known as “anteater man”.
Jun-wei’s skin is very fragile to fall down from head to toe. As wrongly believed
to be contagious, he was refused by schools for many times. Li-ching wanted
same educational opportunities other children get for her son when she recalls
the hard days of looking for schools to accept her son. Fortunately, the Ad
design department of Hai Ching Vocational
School is willing to enroll Jun-wei and help him
pick up confidence in study and walk out of the trouble. In 2004, Jun-wei won
the Golden Eagle award for mentally/physically disabled people issued by the
internal ministry at the recommendation of social bureau.TOP
Li-ching learnt that
many children suffering Bullous Congenital
ichthyosiform erythoderma when she participated in the social services and
activities for related mentally/physically disabled. She founded in 1998
“Kaohsiung City Bullous Congenital
Ichthyosiform Erythoderma Care Association” and encouraged 4 children of
her family to work as volunteers. In view of increasing children suffering the
disease, she founded the first asylum in Taiwan“Kaohsiung Red Baby’s
Family” in July, 2002, offering daytime care and water treatment facilities to
serve more patients and their families.
Watching every child
once judged by doctors to survive no longer than 3 years coming to the school
and learning skills, Li-ching Chen knows well that more people need help. Only
if overcoming the psychological barriers, each face in the camera will smile. TOP
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“My hope is to work
as a lifelong volunteer in Bullous
Congenital Ichthyosiform Erythoderma Care Association!” Jun-wei Li aged
20, is a patient by birth as an “anteater man” in others’ eyes. Accompanied and
strongly supported by her mom Li-ching Chen, Jun-wei learnt how to face life
optimistically by “traveling across Taiwan” to help those patients
living still in darkness.
Li-ching Chen
recalled that all of a sudden, she found the skin of her baby looked like a
coat of glue, falling down in blood. And the baby looked being older than his
age. Surprised and troubled as the families were, they cannot accept the fact
and did not know how long the baby could survive.TOP
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Feeding mom cake
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Like children from
all other patients’ families, Jun-wei did not know what sliding board,
swing-boat and hide and see are as he was afraid of the curiosity of others at
his appearance. When he walked out of his home, he had to wrap himself up as a
“mummy”. However, words like “devil, monster” still haunting his ears and
making his heart bleeding.
Looking forward to go
to school like any other children, Jun-wei was rejected for innumerable times.
However, he finally managed to get into the school in his last efforts to tell
his hard story to media and officials. Now, Jun-wei is a grade 3 student in
Kaohsiung Dingjin Junior High School Night School, enjoying most English and
word processing.
Li-ching Chen once
brought Jun-wei to the affiliated hospital to Beijing Medical University for integrated
western and traditional medical treatment. She understands fully the trouble of
being a Bullous Congenital ichthyosiform
erythoderma patient. Therefore,
she, along with patients and their families, founded Kaohsiung City Bullous Congenital Ichthyosiform Erythoderma
Care Association three years ago. And today, the nationwide Bullous Congenital
Ichthyosiform Erythoderma Care Association will be founded in Taipei.
“I believe that
crisis is the opportunity! “ Li-ching Chen said. She carried out in-sight study
of Bullous Congenital Ichthyosiform
Erythoderma for the sake of Jun-wei and gave great help to her career
development. At present, the objective of the mom and son is to set up a “Comprehensive Bullous Congenital Ichthyosiform Erythoderma Welfare Center” for all the patients across the nation.
The shy Jun-wei, as a
volunteer for the association, always stands out first as “advertisement”.
Looking at unhappy little patients, he always plays his favorite make-face to
make them happy. They hope that all the patients can walk out bravely and face
fate strongly and happily. TOP
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