Angelman Syndrome (AS) is a rare disease. There are very limited resources available in the community to help this special group and their caretakers. Looking back at what my family has gone through, we feel there are huge gaps to be filled in terms of services and facilities set up in Hong Kong. That is why we set up the HKASF. Through this we want to share our experience and assist Angelman for self-development. It is important for families and people who care to hold our hands together and overcome difficulties in life.
We aim to provide aids, love and care through our services and support to Angelman and their families. We also want to raise awareness and promote the acceptance of the full potential among them, eventually improve their quality of life.
We are a strong advocate of shared experience. From personal learnings in local families to academic or medical findings from overseas, we want to ensure those in need will have full and quick access to these information. We are very lucky to be backed by many doctors, educators and seasoned community leaders. They are all “Angels of the Angels” who help us achieve the unachievable. As a family living with the syndrome, we want to stand up for all the Angelman and their families, encouraging them to face all the challenges and the undesirable circumstances. With love and courage, we will gather power and create more positive impacts to others!
We know how it feels. We are here for you!
Founder of HKASF
10th Dec 2009 was once meant to be a joyful day to me, as it was the birthday of my first granddaughter, Chloe. Her great-grandfather (my dad) named her “Wing Ning” (詠寧) in Chinese, with the meaning and hope that she can grow up healthily and peacefully. This hope of us, however, vanished when she turned 6 months old.
Ever since Chloe was born, we experienced a great deal of problems in taking care of her, whether in breastfeeding, learning or sleeping. At first Joe and Joson (her parents) blamed themselves for their lack of experience. Gradually when we noticed the symptoms of high fever and seizure, we became restlessly worried. After repeated testing and diagnostics, Chloe was diagnosed to Angelman Syndrome. It was shocking news to us indeed. The whole family was suddenly trapped in an atmosphere of panic, terror, helplessness and hopelessness.
That was the cruel reality, but we had no choice but to accept. The sooner we could stand up, the sooner and better we could help Chloe. As her parents, it was Joe and Joson who faced everything direct while fighting on the front-line. As Chloe’s grandma, the best I could and should do was to stand by them and be their backend support, help them analyze, prepare and plan for road ahead. I’m glad they let me share a bit of their pain. These years were not easy for me either. But seeing Joe and Joson’s devotion and the patience of their siblings, our family harmony made me feel really proud and pleased.
In Chloe's everyday life, whether some insignificant movements or daily routines, they’re all challenges for her. She spent over 4 years learning to walk. She cannot say out load how she feels and what she wants. She can only stare at you with her eyes filled with hope that you can understand. Sometimes when I see her eyes full of tears, I feel the burning pain inside me. My dearest Angel Chloe, I know your road ahead is rough, but please, don’t panic, don’t give up. Grandma will always be around, to love and protect you. And never forget, you have the blessings from God, you are a real happy Angel.
Joe and Joson are incredible parents indeed. But just with their efforts we would not see Chloe in the condition we see her today. So I’d like also to take this opportunity to convey my deepest thanks to all the medical staff, social workers, therapists and nursery staff who once helped taking care of Chloe. I’m honored to be able to meet you all and get these professionals together from different parts of the society, sharing common values and missions, to help the Angels and their family at the HKASF. I'm sure our hard work and teamwork will arouse the attention from the general public towards Angelman Syndrome as well as other uncommon genetic diseases, to manifest brotherly love and spread it everywhere in Hong Kong, so that more and more people in Hong Kong will be ready to give a helping hand to others in need.
God sent us this little Angel to let us understand the importance of companions. I hope our experience could help and support more people in need. We must turn our misfortune into blessings. Let’s endeavor to spread this message of love to everywhere in Hong Kong.
Chairlady of HKASF
(translated from "主席的話")
How are you doing? If you’ve got an Angel at home, I can imagine your eyes have got a good pair of deep dark circles around them, your hair styled by your forcefully torn hair, your lips and jaw crashed once or twice each month by the “Angel’s Header”, and your hands have transformed into Kung-Fu Hands to dodge the “Angel’s Blow”!
Ever since Chloe was diagnosed, we naturally joined this “minority group” of the society. All the hopes and aspirations during the 10 months of my pregnancy were gone, perhaps with this only one left -- “Be Happy” (as SMILE is the signature of all Angels). We once had hopes and anticipation deep inside -- Will she be smart? Will she excel in studies? What will she do when she grows up? We even fantasized the touching scenes at her wedding. But all of these had to be let go, we told ourselves. We did our best to adjust our mood and we accepted it. But still, some of the weary just never went away -- one day when we’re gone, who is to take care of our Angel? -- Our tomorrow turned all somber...
We once thought that time is the best cure. But gradually, we started to realize the true meaning of “Severe Mental Retardation” and “permanent disability”...their power will not diminish with time. The best cure turned out to be...LOVE.
In taking care of Chloe we faced a lot of setbacks. Plus the thinking that not many people can truly feel, understand, empathize with us as “being different”, it was not easy for our friends and relatives to help us, even if they wanted to, coz we never wanted to share things about Chloe. Honestly at that time we seldom feel comfortable and at ease in front of them. We locked ourselves up, we experienced depression. And coincidentally without sharing among us, Joson and myself (individually) once came up with the silly thought of secretly leaving the world together with Chloe...to let our better half live a better future. Fortunately enough, at such moment of despair it was Chloe’s smile that pulled us both back. With Joson’s strong perseverance and optimism (as always), it was him who first got back on his feet, and then helped me up. When we cleared our mind, we felt like a narrow escape from death. Now, looking back...it’s for sure the silliest thought that we’ve ever had. As parents how could we come up with such silly thought of letting our child go?! What Chloe brought to us was not only pain! She came to this world indeed with the most precious fruits to bring to our family, which are LOVE, JOY, PEACE, PATIENCE, KINDNESS, GOODNESS, FAITHFULNESS, GENTLENESS and SELF-CONTROL. She is, and truly is, a little Angel.
That was how the thoughts of establishing the Hong Kong Angelman Syndrome Foundation (HKASF) came to our mind. We understand it’s a tough job to take care of our Angels. Like us, you might have also experienced such moments of hopelessness, helplessness, or emotional breakdown. (Talking about this I do want to convey my apology to all my friends and relatives if we once let you down. Trust me we didn’t know what we were doing.) And you might once have found yourselves not willing to talk about your little Angel, just focusing on your grief and lamenting. At our critical moment, we were finally able to take courage to step forward, and slowly begin sharing our stories about Chloe, accept people’s care and help, and in turn, help and care about others as well. All these turned things around. Looking at our Angel flying higher and higher every day, as her caretaker how could we dwell in holes of the earth and of the rocks?! As caretakers of the Angels, you must keep fighting, keep the faith, and learn to accept this Mission Impossible. We will do our best to provide you with all information about our Angels that you need. We hope to give you the positive energy and solid support. And we look forward to seeing you join us in helping other caretakers who are in need.
I believe that someone in the bottom of a valley must wish to get a shed of light somewhere. While Joson gave his hand to help me stand up, we hope our hands can help you stand up as well. And we look forward to having your hands to help others as well. Resonance might not be easily found everywhere, but we’re glad we have found you.
Caretaker and Founder of HKASF
(translated from "給天使管理員的信")