You won’t believe what I‘m about to share with you, I barely do! My husband, daughter Elizabeth and I went out to lunch yesterday, a place we go to once every few weeks. They usually give us the same table which has a big space by the side for us to place our pram (estate is precious/expensive here) but yesterday it was occupied.
I happened to look at the two people sitting at that table and something told me instantly that the boy has WHS. It’s not the first time I’ve seen a boy and wondered if he had WHS, having the common facial features, but to approach someone and not only takes courage but not everyone likes to be approached about personal and private matters.
My husband thought I was right, and he agreed with my compelling hunch that I should go over and ask. I didn’t want to interrupt their lunch or if she got angry at my approach and shouted at me I wanted it to be in a less crowded place so I waited until they paid the bill and asked them on their way out.
“Excuse me, I was sitting across the way from you and would like to know, does your son have special needs?”, “Yes”, she replied, “why?”. “Does he happen to have 4P-?” and she said “4P what?”. Immediately I thought, “oh no she has no idea what I’m talking about and I’m so embarrassingly wrong, I should just turn around and politely say thank you and goodbye”. So I repeated myself and the hairs on my face stood on end when she said “oh yes, how did you know?”. Amazing or what?????
I was holding Elizabeth, I thought I’d arm myself with her so I didn’t seem like a crazy woman and could explain myself! She said her docs had told her there were no other 4P- children in Hong Kong but I don’t know when they told her, her son is 11yrs. We swapped much info, mainly talking about the well-being of our children and agreeing about our concerns. All along I was trying to figure out if she would mind me asking her for her number so we could keep in touch but before I could she asked me.
She invited me over to their home when we’re all free, saying she has no “job” and has lots of free time. Her son went to the same school as Elizabeth’s but in a different location, he now goes to the only English speaking school in Hong Kong for special kids (I was told it’s private). Her son, Jimi, is pretty high functioning. He can feed himself with a fork or may be even chopsticks, can chew and swallows with no problem and sits quietly looking around at his surroundings.
Had I not looked at our “usual table” I don’t think I would have noticed him. After meeting him I noticed that his body and face gestures are very much like other WHS kids of that age that I met at the US conference and the UK conference. He answered simple questions and said hello despite being very shy, he wanted to hide behind his mum but was intrigued by Elizabeth and wanted to hold her hand.
As you might imagine I was astonished to have met this other 4P- family and in the manner that we did. We have met so many doctors (since having Elizabeth and dealing with her many symptoms) but yet only two of them have told me they had met another 4P- child in Hong Kong but had not seen them in recent years. Our geneticist said in his 20yr career he has seen about ten 4P- children in Hong Kong.
We’ve never met any other 4P- families in Hong Kong but we’re so grateful for all the other 4P- families who are able to make it to US and UK conferences, having not met all of you I wouldn’t have had the experience to have recognized this family and now I feel we have our own tiny support group!
Yin, Robby and Elizabeth (Oct’ 2008)
Hong Kong