Interview by Sunday Kiss

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The Angels’ smile to be guarded
The little angels educate us to be positive and carefree with their happy smiling faces even though they are not able to speak.
The little angels guide us to look for the most innocent and original us with their unexpected behaviours.
The little angles bring us back to our childhood with their unlimited energy, happiness and playfulness.
Chloe Chan, a nearly 6-year-old girl who is diagnosed with ‘Angelman Syndrome’, has positively motivated her parents, Joson and Joe, so that they are now more optimistic, relaxed and courageous.

Angelman Syndrome
Angelman Syndrome was named ‘Happy Puppet Syndrome’ and is a rare neuro-genetic disorder caused by the damage to the 15th chromosome. In Hong Kong, there are 3-5 diagnosed cases every year. The patients normally suffer from developmental delay, speech disorder, epilepsy, sleep disorder, sucking disorder and dysphagia. They always present a happy face but together with a strabismus, wide mouth, alienated teeth and tongue thrust appearance.

On Air: The little angel and her family
In the latest TV program promoting the UN Convention on the Rights of Persons with Disabilities, ‘Angelman Syndrome’, a rarely known genetic disorder, is introduced in one of the episodes. The appearance and behaviour of the angels are similar to those of Down syndrome patients and they are characterized by intellectual disorder, low self-care abilities, limited eye-leg coordination, stubborn personalities and hyper-active performances. The happy faces hung on the angels make the major difference. According to the data from the Health Department, there are only 50 Angelman Syndrome cases in Hong Kong over the last 25 years. One of them is Chloe, the main character in the TV program. Chloe and her parents are the first Angel family who is willing to show up in public. Joson (the father) and Joe (the mother) do not only act in the program but also established an organization for the Angelman patients so that they can arouse public attention and understand more about the angels.
‘When we noticed that Chloe was diagnosed with Angelman Syndrome three years ago, our minds went blank. What is Angelman Syndrome? What symptoms do they have? How will the angels be in the future? There were thousands of questions in my mind,’ said Joson and Joe. When they wanted to know more about the disease, they were surprised that there was no local information. Therefore, they hope to gather all the angels and their families and arouse public awareness. That’s why they initiated the Angelman Syndrome communication platform in Hong Kong.

Developmental Delay: An uneasy feeling
Chloe will be 6 years old next month and there was so much hardship for Joson and Joe to witness Chloe’s growth. ‘When Chloe was young, she could not sit, eat or sleep well and was afraid of strangers. We thought it is very common [among] most children. However, when she was 7-month old, we found that she has the problem of strabismus which the doctor suspected a possible brain problem. Later, we discovered that Chloe has developmental delay and all the checking such as X-ray and spinal fluid checks gave us no clue about what’s going on. The doctor said DNA check is our last way out but he said if the case is gene-related, it means it would be cureless. We were so helpless at that time but we still hope to know what happened. Of course, we were also worried if Chloe is really sick.’ Joe said. When Chloe reached 21 months, she was diagnosed with Angelman Syndrome.
Taking care of a healthy baby is not easy and not to mention a sick child. Joe continues, ‘Angelman babies cannot take care of themselves and will have developmental delay. Normal children can walk at 1 year old but Chloe could only start walking when she was four. She is still unable to talk now but can articulate simple sounds like ‘Papa’. Also, she knows how to clap her hands consciously this year. You may always see her opening her mouth wide or showing her tongue as her mouth muscle is not well-developed. She has to be very slow in eating or sucking and will also slobber easily.’ In Joson and Joe’s eyes, Chloe is a baby who will never grow up.

Insecure feeling without dad
Other than weaker-than-normal body functions, the unique habits of Chloe also bother her parents. This interview took place at the crowded West Kowloon Waterfront Promenade and Chloe could only feel secure when she was carried by her father. ‘Since childhood, Chloe likes to stick with her father,’ Joe said, ‘and her first word is also “Dad”. When she is carried or accompanied by Joson, I can play with her at the same time and distract her. Chloe is always very curious and like to play with zips, paper, plastic and water as these are special textures. I will then prepare more paper and plastic bags for her to play with.’
Joson added, ‘Chloe is always very stubborn and cunning. Although she is diagnosed to be mid-to severe intellectual disability, according to relevant standards, she knows what she likes and has her own thoughts. For instance, she will only drink the herbal tea or soup we prepared when it is mixed with her milk; she would cover her head if she is not happy with her hair cut. Also, she is very sensitive and avoids being touched. It’s a nightmare to brush her teeth or conduct eye checks. We need a few people to keep her under control or she will keep struggling and hurt herself – the doctor is still not able to check her eyes.’

Treasure every day
At home, Joson and Joe work hard to take care of Chloe. They have to take turns at night to take care of Chloe as she cannot sleep for more than four hours normally and may suffer from epilepsy occasionally. Joson remembered once when Chloe was suffering from a critical cramp, he thought she was going to leave him. ‘The cramp is non-stop and she kept vomiting. Because of Chloe, we took first -aid courses and we know we should give medicine to Chloe when she is suffering from serious cramp before sending her to the hospital. There was one time Chloe’s body temperature rose to 40°C in 20 minutes and she was unconscious before arriving at the hospital. So now, we treasure each day and do our best to take care of her.’ Joson said. Joe has been discouraged and frustrated for a while as she understands that Chloe will be unable to take care of herself in her whole life. It is Joson, her husband, who supports and encourages her to face it together.

Companions supporting each other
‘Joe has been frustrated and it is not easy to help her as she also suffers a lot when taking care of Chloe. One day, she suddenly said she is so thankful that I am standing by her. She wants to know how other angel parents are living and she wants to look for companions.’ Because of Joe, Joson decided to set up an organization for the angels. ‘Even the doctors have limited understanding about Angelman Syndrome. They want to know more from us every time when we bring Chloe for regular check-ups. We even brought Chloe to Canada and liaised with the local patient organizations to learn to take care of her.’ Joson added.
From then, Joson started to understand, learn and ask for help as well as to set up the non-profit organization named ‘Hong Kong Angelman Syndrome Foundation’. He has now gathered 18 angel families and targeted to look for more lost angels. Now, they are applying for it to be a registered charity organisation. ‘Joe is the Chairman now and she is fully devoted. When she met other angel parents, she is so eager to share and support others. We set up the foundation for the angels but actually the angels are helping us too.’ Joson said.

Tasks assigned for all angels
‘The happy, joyful and optimistic personalities of the angels are the pain killers of their parents. The progress of each angel will liven up the parents. Angels may need a thousand times to learn a skill while normal children may only need 10 times. But once they are able to do it, it is so surprising!’ Joson said. Chloe went to a special school when she was 2 years old. Joson and Joe was well-prepared: had good communications with the teachers and let them understand about Chloe’s personalities and also prepared enough plastic bags, water bottles, plastic toys, water, etc. for her. Joson remembered the time when he was waiting outside the classroom, ‘I was like waiting for my wife to give birth. I felt nervous and worried when I heard Chloe crying. I wanted to go into the classroom immediately but worried that she would cry even louder.’ Joson said. Luckily, Chloe is able to adapt to her school life with the love and patience of the teachers. She learnt to walk in school and love carrying her school bag. Though she cannot express herself by words, she is more sensitive and has stronger feeling than normal children.
The smile of Chloe brings the Angel’s gift, not sympathy. It’s Chloe who made Joson and Joe so brave and treasure what they have. From now on, the whole family is so positive, optimistic and full of hope!

The interviewer: They impressed the community
Joson and Joe’s love for their daughter has impressed a lot of people in Hong Kong. It is their first time to act with Chloe in one of the episodes in the TV program named ‘沒有牆的世界V’. They emphasized that they are just ordinary people but they are willing to take up the challenge by acting in the program since they have taken the first step and are encouraged by the production crew. The program had not been broadcasted yet when the interview was conducted but they are so looking forward to it. I have seen the stage photos and snapshots and have been impressed by the potential of Chloe and the unconditional love from Joson and Joe.


Angel’s Poem
To watch the episode, 〈Angel’s Poem〉

Hong Kong Angelman Syndrome Foundation (HKASF)
The foundation supports, shares, cures and trains the patients and their families and organizes events and seminars to unite the angel families from China, Hong Kong and Taiwan so as to arouse public awareness of Angelman Syndrome.

Website : www.hkasf.org
Facebook Fan page : www.facebook.com/HongKongAngelmanSyndromeFoundation


Written by: Esther Ngan
Photos: photographer Wong (Part of the pictures are provided by the interviewee and RTHK)
Sources: Hong Kong Angelman Syndrome Foundation

Sunday Kiss | 12-11-2015

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