Interview with Economic Times - Parents of Angelman Syndrome Children: Children are gifts from heaven

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When a baby is born, every parent’s expectation is to see him grow with health. If the child born with a rare disease and suffered with severe mental retardation, it will impact dramatically to the child’s parents.
Joson and his wife, Joe’s first child Chloe (7 and a half year-old) suffers Angelman Syndrome which is a rare genetic disease. There is a problem in the 15th chromosome causing the lack of brain that is diagnosed as middle to severe mental retardation.
Angelman syndrome is a complex genetic disorder that primarily affects the nervous system. Characteristic features of this condition include delayed development, intellectual disability, severe speech impairment, and problems with movement and balance (ataxia). Symptoms include a small head and a specific facial appearance, severe intellectual disability, developmental disability, speech problems, balance and movement problems, seizures, and sleep problems. Children are usually happy in nature and have a particular interest in water. The symptoms generally become noticeable by one year of age. The special part is that the patient often show the happy face like an angel smiling so it is called “Angelman Syndrome”.

Get Used to the strange look from others
Joson said his wife and he had a body-check before getting married. During his wife’s pregnancy, every check-up was normal. The deliverance is smooth and successful. When Chloe was half year-old, she was discovered by a doctor that she was with slow development and referred to different specialists to do more detailed check. The result indicated that she cannot achieve the standard level in many items. When Chloe reached to 20 months old, after DNA test, she was diagnosed with Angelman Syndrome by the doctor.
Chloe would have sudden seizures. She also had had a fever up to 40C before, plus with the sleeping disorder, every night she cannot sleep consecutively, it is not easy to take care of her, but the couple accumulate quite a lot experience, finally we can handle it till now, Joson said. When Chloe is a baby, the situation is not so challenging. However, when she was growing up, her development was getting slower and slower than others. The whole family had to suffer from the strange look from others.
Chloe’s IQ stays at age of 2. The appearance and behaviour are different from others which easily drew attention. Joson said Chloe’s character is a bit stubborn. For example, obviously she knows how to walk, but asking for hold her in the arms to walk. If he refused, she kicked off the shoes, crawling from the bottom of her dad like a koala, up till his body tightly tied up by his daughter. It is hard to avoid others’ whisper when they saw the scene.
Once the people on the street told them: “You don’t know to teach the kid!” At first, they felt sad, gradually, they get used to it. If the time is allowed, they will try to explain Chloe’s situation to them with peaceful minds.
Looking back, the moment when Joson heard his daughter got Angelman Syndrome, he felt so depressed. After that, he figured it out that as her parent who cannot accept this defect, how can he ask others to accept his daughter? Joe also looks at the bright side, Chloe changed drastically their lives, she said, before I did not understand, facing the difficulties, I would ask myself “ Why this happened with a critical attitude and avoid?” But now I won’t, because I deeply believe everyone has his burden and pressure.

Accompanying his daughter to experience the life
Joson describes, the patients with Angelman Syndrome have mid to severe mental retardation, but their cognitive ability is better than their communicative one, they can understand other people’s message. It is a good thing from the carer’s perspective. In order to let Chloe have a normal life, the whole family will travel, visit the zoo and the aquarium. Chloe was so excited to see the lovely animals, trying to chase a small goat. Of course, they encountered some embarrassing moments while travelling. The attention was on Chloe smashed the tableware at a restaurant. Sit on the airplane, she refused to buckle up her seat belt. We as parents tried everything, nicely and strictly, to handle the situation. During the time, it was inevitably to disturb other passengers. Joson said directly: “It is not easy to travel with Chloe, but noticing her improvement in the cognitive ability, we will definitely bring her to explore more of the life.

The Happy Family with their newborn daughter
After a while, Joson and Joe had their younger daughter Cherry who is completely normal. When Joe mentioned back then she was worried about her pregnancy. Her mind is like a battlefield. She said” I need to take good care of my older daughter wholeheartedly, but I cannot give up the life in my belly. She worried if she can handle the two children in the future. Finally, the little daughter came out, grew up gradually, and brought a lot of positive energy to the family. Just as Joson said that the family of four cannot miss anyone.
Cherry is influenced by her sister, the two sisters grow up together since little. They spend most of time together. The younger one thinks her elder sister is the one to imitate. She likes to compare herself with her elder sister. Once the younger one was not willing to do a lot of things. She asked “Why you hold sis on your arms but not holding me?” Why sis did not need to eat with her own hands?” Until she went to school, knew more other people, realized that her sister is different from others, gradually she knows how to get along with her sister.
Joson added, children are gifts from God. No matter if they are healthy, or the family are poor or wealthy, all need to accept their children. They taught Cherry to accept Dad, Mom and the sister, also taught her how to accept others. Joson truly believes that Cherry has more compassion than other children at the same age of hers.

Hong Kong Angelman Syndrome Foundation Established
Joson said, the birth of Chloe is not a regret, but stimulate their unexpected potential. He believes it is a “mission” to make them to serve the “Angel” family today, furthermore, for the physically handicapped in the society.
They are grateful that they have family and friends to support and accompany with them. When they face the most difficult time in their life, they also want to know the same situation in other families. Therefore, they set up “Hong Kong Angelman Syndrome Foundation” and the facebook page - Hong Kong Angelman Syndrome Foundation, to strengthen the connection with the “Angel” families. He believes besides his own little “angel”, other little “angels’” families can be benefited from the foundation.
The couple often take their two daughters to visit other “Angel Families”. From that, they observe Chloe was normally shay and scared of strangers, but arriving at others’ home, she felt like coming back her own home. She will automatically slept on other “angel’s” belly. It is really interesting to look at the scene. Now Chloe already goes to school, her character is calm. She got praises from the teacher. She becomes more behaved and knows how to eat and walk by herself.

We are not afraid to die.
Since gathered the” Angel Families”, every family learned and gained more information about the nature of Angelman Syndrome. This is quite important, because doing so can enhance their training to make more “angels” have progress.
Listened to the sharing from the “angels’” parents, I learned a lot. Some parents already thought of many ways to teach the little “angels” while others can have more information to prevent some invalid ways to teach them.
Because of Chloe, Joson experienced that men’s ability is limited. He expects other “Angel’s families” can connect closely to one another to become a big family, instead of an independent individual. When one of the family has a problem, all others can gather, support and care for them. As their parents, we do not need to worry about the future, because the other families are still here to protect every little “angel”.
In addition, HKASF set up a website called “One Click Care HK” which is the first platform for the physically handicapped family in Hong Kong to gather the data from different patients. The association hold the movement of “caring tables” in HK to promote spacious place for the handicapped or the special needed in a restaurant and also the longer time for dining at the “caring table”.

Interviewing place provided by Amaroni’s
Reported by the TOPick journalist: Ho Bo Wah

If you want to know more about us, welcome to our website:
www.hkasf.org
www.OneClickCareHK.com

Article: https://topick.hket.com/article/1941161
Video:https://youtu.be/Yo7KvtWrA7g

Hong Kong Economic Times | 7-11-2017

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