Interview by Sunday Kiss

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Angel Family Overcomes the Hurdles with Cheers

"Take your time, kids!" Parents with little angels learn to slow down. Cheuk-man, turning to 5 years old, is suffering from a rare disease called "Angelman Syndrome". The little angel was brought on earth to inspire his parents. Cheuk-man is like a child who will never grow up, innocent always, but sometimes he is like knowing too much and laughing at all worldly things. Cheuk-man will be very satisfied whenever he is with his parents and is given time to eat and play. He is a special child asking his parents to live strong and tough and not to catch up with the mainstream or to worry about tomorrow!

Angelman Syndrome (abbreviated AS), is a rare disease caused by the chromosome 15 defect. In recent 10 years, there were 55 confirmed angel syndrome, patients’ age ranging from two to 33. Symptoms include growth retardation, language disorders, epilepsy, sleep disorders, and suck or swallowing disorders. The patients always appear to be happy, strabismus, mouth wide and like to stick out their tongues.

55 Angelman Patients in HK

Many people are unheard of the Angelman Syndrome because only 50 odd cases have been confirmed so far. They are not known to the general public until recently. Angelman patients are described as “angels” for they have pure joy like Cheuk-man. Because of developmental delay, coupled with different kinds of diseases which take time to cure, Cheuk-man could not even walk or speak at the age of 4. However, he has refined smart side when it comes to "eat". He is an “expert” of all kinds of snacks, cakes and star-shaped biscuits. He is so persistent concerning eat and always filled with happiness when eating. When Andy and Cherry, Cheuk-man’s parents, feel worry about their son’s future, their worries will be quickly casted away when they see the playful side of Cheuk-man. Without being inspired by their son or the support from the other Angel families and their own family, Andy and Cherry will not be able to remove all worries concerning Cheuk-man.

Guilty Mom and Sick Child

Today, Andy and Cherry seemingly have calmed themselves down when they talked about the sickness of Cheuk-man. In fact, they have had a rotten day in the past. In particular, Cherry has been used to blame herself so much so that almost drilling herself a dead end. "Is it because I did not eat the fish maw during pregnancy? Is it because I did not breast feed my son? Or is it because I did not make enough effort to give birth and so my baby’s brain suffered from transient hypoxia when he was sucked out by the suction device?" She asked herself many times, "Why is my son sick?" Cherry, who now learns to let go, feels so blessed that her husband is always around to take care of herself whilst he is also looking after their son. "The boys usually develop more slowly. No need to be so impatient." Andy and Cherry as new parents, were always told that boys usually develop more slowly and therefore did not bother too much about the slow development of their son. The discovery of the Angelman Syndrome was never a straight path to them. "Cheuk-man was born on due date but weighted only 4.7 pounds. He was diagnosed to have dehydrogenase deficiency, which by nature cannot get in touch with any broad bean, mothball, or consume certain traditional Chinese medicine and Western medicine. Otherwise, he may appear hemolysis which will be severe enough to cause coma or even life-threatening,” Andy said. Ddehydrogenase deficiency was yet to resolve, Cheuk-man suffered from high fever at one month’s old and was admitted to the emergency room fearing meningitis. He was found to suffer from urethritis for reason unknown after doing lumbar puncture.

Dehydrogenase deficiency and poor renal function

At 6 months old, Cheuk-man was found to have low capability, unable to sit or use his hands to grab objects during a regular check-up at a maternal and child care centre and was then referred to a pediatrician for further examination. Unfortunately, urethritis hit again and Andy and Cherry need to put aside the developmental problem. Andy said: "Ordinary children have no reason to be so susceptible to bacterial infections. Urethritis appeared twice during a short period of time. Worse still, that time the right side of Cheuk-man’s urinary system was found to be severely deformed (level 5). Such urinary system abnormalities will in turn affect the kidney. Then I were told the right renal can only function up to 13% (the norm is 50% on each side of the kidney).” Suffering from dehydrogenase deficiency and poor renal function, Andy and Cherry have become very conscious concerning the diet of Cheuk-man. They do not let their son eat hawkers’ foods, salty foods and will always cook him porridge, let him eat mainly fish and meat and so on. "Although people can survive even with one side of the kidney, we do not want Cheuk-man to overly rely upon his good side of the kidney. If renal function falls below 10%, it may risk removal or requires dialysis or even transplant. We need to do our very best to protect his kidney, "Andy added. Cheuk-man suffered from urethritis for the third time when he was 14 months’ old. Having no choice, he had undergone urology minimally invasive surgery and synchronous circumcision in parallel. Fortunately, urethritis has not occurred since then.

Daddy is the Pillar of mom and kid

Apart from facing dehydrogenase deficiency and urinary problems, Andy and Cherry also have to handle the delay in Cheuk-man’s development.. "At the time we thought we need to give priority to his health problems and therefore had put aside his developmental problem as we consider the latter has less urgency. We have not thought about mental retardation or other problems. We simply thought he might have just missed the golden period to learn as a result of the prior medical treatment. We also thought it’s a norm for boys to develop slower than girls. Afterwards, we kept asking pediatricians why Cheuk-man couldn’t sit until he reached 7 or 8 months old. Why he never climb? Why he couldn’t speak even a word? The pediatricians did not really know what’s wrong with Cheuk-man but just said his ability is like a 6 to 7 months’ old child even though he was already 14 months’ old. Our hearts sank at the time," Andy added. Andy was previously engaged in banking sector and had quitted his job to take care of Cheuk-man after knowing that his son needed surgery due to urethritis. Compared with Andy, Cherry is relatively nervous and always in tears. Cherry looked at Andy and said: "Basically I count on him on everything.” Andy is the one who takes Cheuk-man to hospital for most of the follow-up consultations. Cherry cannot accept the fact that her son has problem with his intellectual and physical development. "As soon as I heard my son would have to enroll in a special school, I just couldn’t help crying as I have always thought of picking the best kindergarten for him. Why should it be a special school?" Fortunately, Andy is always there to boost her energy and to shoulder the family burden and tasks.

Ignorance causing helplessness

After doctor’s referral, Cheuk-man was given the opportunity to undertake a genetic test after a waiting period of 12 months in order to identify the cause of developmental delay. During period, Andy and Cherry were very disturbed whilst Cheuk-man was having, at the expenses of Andy and Cherry, physical therapy, speech therapy, occupational therapy, massage therapy, acupuncture and awaiting admission to a special kindergarten run by Heep Hong Society. Andy and Cherry were under tremendous pressure and anxiety at that particular stage. In addition, Cheuk-man would cramp once a month since he reached 2 years old. Cherry recalled that she would cry every time when Cheuk-man was sent to hospital, fearing that she might lose him. "Cheuk-man’s cramp lasted more than a year. The injections, oxygen absorption and regular 3-day-2-night check-up have become part of his routine. We don’t even know epilepsy may also occur for Angelman Syndrome and only know admission to hospital is required whenever cramps occur until they are discharged. All I feel was numbness under such poor cycle! "said Cherry. Not until genetic tests result is available, we know our son has been suffering from Angelman Syndrome. A group of unfamiliar words, and even doctors or practitioners do not have much information, helplessness attack them head-on.

Relieved to find fellows

Last year, Andy and Cherry visited other little angels after they came across the Angel families in the newspapers inadvertently. They found that Cheuk-man is not alone. "We were once very worried about our son's future. However, we were relieved as soon as we contacted The Hong Kong Angelman Syndrome Foundation and heard from our fellow Angel families that the situation is not hopeless and what the angels really need are intensive training and constant courage. All Angel families are even thinking of building a home for the angels so that they can be taken good care of after their parents passing away,” said Cherry.

Enjoy life through hardships

Andy and Cherry are so grateful that they managed to overcome each and every crisis during the past 4 years. Cheuk-man will turn to 5 in July but with ability as a child of 18 to 24 months’ old. Cherry, who now learns not to catch up with key milestones, said: "Cheuk-man cannot speak or stand, but he is very good at reading people’s mind and recognize people’s face and is eager to cheer people up by making laughter or funny face. Sometimes when we practice walking with him, he will tactfully drag us to the food corner for food. I told him to be good and he understands. He will obediently consume cramp potion every day. "The couple and their son have been fighting for their battle positively. At the same time, they see little angels getting concern from the general public instead of being neglected. All these add them strength and power!

Postscript: Angel Gift

Before approaching Cheuk-man, I had contact with another little angel, Chloe. I met her again during this interview and found her more mature and more courageous. When Chloe met Cheuk-man, she turned to become a big sister, patting him on the back and sat him straight. Witness the growth of a little angel, I believe it is the reward of her parents’ hard works. Parents are the real angels and their love is the best nutrient for the growth of little angels.

Sunday Kiss | 30-06-2016