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The Angel’s Gift - Parents with Smile to facing the rare disease

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The Angel’s Gift – Parents learnt to treasure from their kid with rare disease

5 year-old CHEN, Wing-Ning is just like other children: pricking the soap bubbles, crying for separation when going to school, laughing heartily on the carrousel. However, the congenital genetic defects cause Wing-Ning suffered from Angelman syndrome: IQ remained under 2-year-old, spasm attacked from time to time. Nevertheless, the parents, Joson and Joe said the daughter who always smiles is the gift from angels, taught them how to be courageous. This June, the couple established the first organization of Angelman syndrome in Hong Kong, to share the experience of taking care of Wing-Ning and to help other “angels”.

Wing-Ning always appears in the relatives’ gathering. Everyone calls her “Chubby Piggy”. Hearing others called her, Wing-Ning laughs a lot, even hug the person. Although Wing-Ning is language impaired, she is more sensitive and emotional than normal children. The cognitive ability is still above average, the father, Joson said. The parents will bring Wing-Ning and her younger sister “Cherry” to travel, swim, and skating. Besides the physiotherapy, he also wants to cultivate her potential more.

Every time the parents take a lot of trouble to bring Wing-Ning outside. They need to prepare the crumpled paper she likes to pinch and plastic bags to comfort her. Moreover, they have to watch over if her tongue biting too tight because of tension. They are also afraid of the heat or fatigue caused her cramps. “Sometimes going far away, they can only stay around one hour, but also want to bring her to see the things which normal people see.”

Joson uses his lunch time to pick up Wing-Ning by driving from a special need school everyday, only 15 minutes left to eat lunch. The dining room for 4 people family becomes a bedding playground. Therefore, she is not afraid of injury because of any movement.

Since two year-old, Wing-Ning needs to be hold. Till last year, she learned to walk. Now, she can carry the school bag to school by herself. The parents said Wing-Ning constantly brings them surprise. Talking about holding the door to prevent her parents to go out, Joes laughs while speaking. “She improves lately, even knows how to get her own shoes.”

The daughter’s little improvement already makes the parents satisfied, but every time she becomes ill which also gives them heart-breaking time. In addition to the sudden spasm, Wing-Ning’s body temperature has been up to 40℃ within 20 minutes. Joson drove her to the clinic nearby within 5 minutes driving distance. Wing-Ning once went into shock. When Joe recalled the experience, the lingering fear persists. “My whole body is like jelly in dread.”

Before Wing-Ning had the definite diagnosis, Joe thought she was not a good mother so her daughter was difference than others. “She does not want to eat. Do I cook not well enough? “The couple felt helpless. During a whole year, Wing-Ning had been checked with all possible tests until Joe was pregnant again. She got the permission to have DNA test. Wing-Ning was confirmed by suffering from Angelman syndrome. “We all need time to accept and digest the reality, because we know she will never recover.” Joe said.

Joe really appreciated Joson acting as the positive role at home, accompanying her to face every challenge. To take care of Wing-Ning better, the couple flew to the Angelman syndrome foundation in Canada 3 years ago. They learned the first-aid, nursing, and emotion-control for the children with AS. To this couple, Wing-Ning’s illness is not a regret. Instead, she is a gift from an angel. She let the family learn how to cherish and help others. “She gave us a huge motivation, no matter the past, the present, or the future, the love to her extends to others.” Joson said.

The helplessness and the experiences in Canada had made Joson and Joe felt the urge to establish the first Angelman syndrome foundation in Hong Kong. They can provide the platform in English and Chinese with therapeutic sections, training courses, lectures, and educational activities. They are like the gifts for the families who have children with Angelman syndrome in Hong Kong, even in all Chinese societies. They also hope the society to pay more attention to the rare genetic disease. The organization is founded in June 2015, but the couple comes from the well-off family. They need to fundraising to help the development and related research locally. The goal is to raise HKD 800,000.

Hong Kong Angelman Syndrome Foundation Telephone/Whatsapp inquiry: 5125 8111


Prevalence rate of 1/62,000, there is around 50 AS cases in Hong Kong.
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Special Need teacher who take care the angel shared that, they need more the sense of security.
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Apple Daily | 29-8-2015