Superb parents smile to the gift from heaven

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Chloe almost 7 year-old, always has a smile on her face like an angel. However, she has had developmental delay and lacked of linguistic ability since little. Under 2 year-old, she was diagnosed with a rare disease called “Angelman Syndrome”. When having heard their daughter got the incurable disease, Joson (father) and Joe (mother) felt so depressed and helpless. The thing Joe worried the most was that there was no one taking care of her daughter someday, even thought of jumping down from the height to go back to heaven. Luckily her husband has been so supportive around her and helped her on the verge of drowning. The couple got out of the low ebb and determined to face the future together. Moreover, they are the first couple as the patient’s parents established ”Hong Kong Angelman Syndrome Foundation ( HKASF) which is the first organization for the Angelman Syndrome in Hong Kong. Their notion is to bring the Angelman Syndrome to the public attention as well as gathering the “little angels” from every corner to support one another. They want to let the “little angels” know that they are not “alone” in the world. They also hope to offfer more positive energy into the society.

Turning around, learning to crawl and talk are the initial stage for every toddler, which is also the images every newly parent expects. However, there was tear and blood when Joson and Joe watching Wing Ning’s journey to grow up. Wing Ning was born in 2009 with full-term birth and natural labor. Her mother also had every prenatal check-up, but there was something seemingly different from other babies since Wing Ning was born. Joson and Joed recalled that Wing Ning could not turn or sit still when she was at about 6 years old. Besides, she could not pass the regular check-up from the Maternal and Child Health Center ,which was suspected to have slow development. After that, Wing Ning was referred to the specialists such as Pediatric Neurosurgery, Orthopedics, Physiotherapy…etc in order to find out the cause of the developmental delay. Before the definite diagnosis for Wing Ning, the couple felt really helpless. Throughout the whole year, they took the daughter everywhere to do the check-up, acupuncture, see Chinese medicine doctors, chiropractors (spine doctors)…even the alternative treatments. Until Joe was pregnant again unexpectedly, the doctor worried about the same problem might be in the second child, they had a chance to take the genetic test earlier. As a result, Wing Ning was diagnosed with “Angelman Syndrome”.

When the doctor told them the disease was incurable, the couple went blank at that time. “I have never heard of this disease. It sounded like a huge problem. When I learned that this is an incurable disease, I felt so depressed. I was worried if we could not take care of her some day. I even called and looked for a dormitory for her.” Joe continued “At that time, I conceived the second child accidently. But facing Wing Ning’s disease, the relatives had been worried that we would have more pressure and persuaded me to give up the second child.” Fortunately, she got the full support from her husband accompanying her to face all the challenges. Therefore, they both affirmed that the two children are the gifts from heaven. They would never give up anyone.

Normally, children learn to crawl at about 6 months, and already know how to walk at one year old. However, the children with“Angelman Syndrome”have severe disabilities in the intelligence, the movement and the language. Wing Ning had not learned how to crawl until aged 2. Her first step was waited till aged 4 and half. Nowadays, she can only uttered “pa pa” to call her Dad. Even a little progress already made the parents satisfied. “When other children need to learn 10 times, she might need to learn many times without any successful outcome. But the most important thing is that we are willing to accept the failure and face the difficulties. Joson said.

It is not easy to take care of Wing Ning, because the patients with “Angelman Syndrome” cannot sleep more than 4 hours consecutively. The couple need to shift to take care of her tirelessly. In addition, there is a life-threatening condition: spasm. The couple already learned the first aid just in case. Surely, they also learned how to take care of Wing Ning as well as controlling her emotions. Since they both need to work, they take care of her in turns. Even they hire a domestic helper, Wing Ning still needs to hold on to her Dad for security. Joe said “ Since little to grown-up, She attached to her Dad so much. Whenever she speaks, she says”pa pa””. She also mentioned about her husband’s busy day: He has to pick up Wing Ning after special-need school. After work, he has to buy groceries. In order to take care of Wing Ning, he got stomach bleeding and face paralyzing before.

Even though they feel tired, they never think of giving up. After their daughter has suffered the disease, they have learned how to cherish the whole family. Joe said “Although the elder daughter suffered the disease, we still took her outside to play when we had a holiday. Maybe it is difficult to travel so far and only having a short time to stay, we still hope she can have a quality of life like other children. This summer vacation the whole family had a trip to Okinawa. “ she continued “ Every time when we go out, we are worried if this is the last chance to go out with Wing Ning. “ Because of Wing Ning’s disease, she learns how to be content and cherishes every opportunity to travel together as a whole family. On the contrary, she never thinks that her daughter is a burden. Earlier, Joson invited the journalist to take a photo in the Cyberport Podium Garden. We saw the whole family playing on the grass. It was a simple outing but they already felt content and happy.

However, because of the traditional culture of the Chinese society, Joe also worried that Wing Ning would be discriminated in the beginning. She did not dare to talk about her disease in front of other parents and relatives. She explained that “the little angels” often have happy faces, easily feel exited, laugh out loud and clap hands frequently. To prevent from disturbing others, quite a few families with the “angels” do not dare to go out. Therefore, the couple model themselves. They hope the society can accept the “little angels” and let them fit into the healthy people in the community with harmony. As a result, they decided to prepare a first platform for the “Angelman Syndrome”. After the preparatory work for 3 years, Joson and Joe finally established “Hong Kong Angelman Syndrome Foundation” in 2015. Through the foundation, they help others with their own experiences. Besides, they also provide therapy, training, seminars and educational activities to bring the rare disease into public attention.

A lot of people have never heard of “Angelman Syndrome”, so last year RTHK broadcasted the real-life drama“A wall-less World Series” to promote the “Convention on the Rights of Persons with Disabilities” from U.N.. One of the series describes exactly about” Angelman Syndrome”, Joson and Joe acted as themselves in the drama, even Wing Ning acted as a young leading role. The program hopes to bring out the spirit of the Article 10-Right to Life in the “Convention on the Rights of Persons with Disabilities” which is “every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”

Earlier, the real-life drama was shortlisted for the Life Long Learning Category in the 43th Japan Prize International Contest for Educational Media 2016. Joson’s whole family had the opportunity to participate the event in Tokyo, Japan. Even thought in the end they did not get the award, they seized the chance to share and communicate with other families who have the “little angels”. They also visited the special day care center there.

Joson brought up especially that the facilities are simple, plain and comfortable in the special day care center in Japan. The staffs take care of the patients with sympathy which makes the center with the feelings of “Home”. He hopes the society in Hong Kong can also have the same respect and loving care to the disabilities and the mentally disabled.

Besides, “The Bridge of Rehabilitation” the local private nursing home for the mentally disabled where the former superintendent Cheung Kin-Wah
of the Bridge of Rehabilitation Company, allegedly had unlawful sexual intercourse with a woman. The former director had escaped legal consequences. The event brought to public attention. After the “little angels” leave the special schools, the next step is to wait for the dormitory for the adult disabled. HKASF also pay a close attention to the event of “The Bridge of Rehabilitation”. They even joined the march earlier and urged the government and the organizations in the society to take it seriously about the supervision and the quality of the nursing homes to prevent the similar event from happening again.

To increase the public awareness of “Angelman Syndrome”, Joson and Joe established the “Hong Kong Angelman Syndrome Foundation” in June, 2015 and became the recognized charity group in Hong Kong on January 7th, 2016. The purpose of the foundation is to offer the support and share the experiences with the families, who have patients with “Angelman Syndrome” to unify the “Angel’s” families through therapy, training and activities on a regular basis. They also provide gatherings and training courses, etc.

Since the “little angels” normally have few opportunities to join the activities, the foundation will strive to lead the “little angels” and their families to socialize with the communities. From time to time, they hold some activities such as experience camp and booking a theater to watch a movie, etc, to let them have a enjoyable time together, encourage them to walk outside and explore the world. The most important thing is to bring them out to integrate with the society. In the start-up period, HKASF already joined the Hong Kong Alliance for Rare Diseases (HKARD) to become one of the members. HKASF also communicate, exchange the information and learn with the organizations of AS all around the world.

The patients with “Angelman Syndrome” mostly have moderate to severe intelligent disability and communicative difficulty, but they are able to develop the cognitive skills. Joson said Wing Ning has a positive personality and some cognitive abilities. He often demonstrates in front of his daughter how to use i-pad to watch YouTube and photos. Gradually, his daughter can turn on YouTube by herself and sometimes listens to music. The father said some APPS designed for the special children in other countries provide the communicative systems with simple images and texts that are like a cognitive pad. When you touch one spot of the pad, it appears colorful images and sounds to help the patients to communicate. HKASF proactively promote and join the research and the development. They cooperate with the companies of technology and research to design some special apps to fit the scale for the “little angel’s” training and their own abilities.

Tai Kung Post |13-11-2016

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