Ever since I was pregnant with Maddy, I have been wanting to connect with other parents and people with similar conditions. One of the first things that I did when we found out that Maddy had a skeletal dysplasia was to look up other blogs and find contacts who I could talk to about our journey. I have been so blessed this past year to have made some amazing contacts through the internet.
I always hoped to be able to meet some dwarfism contacts in real life rather than just through the internet, but when I inquired about dwarfism support groups in Hong Kong, I found that there are none. The US has the LPA (Little People of America), Australia has the SSPA (Short Statured People of Australia), but no such group exists in Hong Kong.
Not long before we went to Australia, I was emailing the fabulous Buckeroomama who taught us a Babysigns course when Lana was a baby. I wanted to ask her about signing for Maddy since Maddy has restricted movement in her hands - and in the course of the conversation, she mentioned that she happened to have a friend with a daughter with dwarfism, and would I like her to put us in touch with each other? I was so excited - it was completely unexpected and I had been looking for contacts here in Hong Kong for ages!
The following week, one of my friends here in Hong Kong emailed me and mentioned that she was at a playroom and noticed a young girl with dwarfism so she started talking to the girl's mother about me and if I wanted, here were her contact details!! So after a year of not finding ANY dwarfism contacts here in Hong Kong, in the matter of a week, I had made TWO new contacts!!
The three of us all have girls and they all have different forms of dwarfism. The oldest girl is 11 and has hypochondroplasia, one of the more mild forms of dwarfism. The next oldest is 5 and has the most common form, achondroplasia. And then of course there is Maddy :)
I was able to meet up with one of the mums and her five year old before we went to Australia. Since returning from Australia, all three of us have met up for coffee. We plan to do it more regularly - but both of the other mothers are heading over to California for the big LPA national conference in a couple of weeks so we will have to wait until they get back (Wish we could go too - maybe another year!!) Yay for new friends!! :)
Yay for new found POLP friends!!! If these mom's are on FB, would you suggestion them to me? We've got a few POLP get togethers and we'd love to include them if they would like. Thanks!!
ReplyDeleteDear Nicole,
ReplyDeleteI have been doing the same these days - searching for dwarfism support group on web. I was also surprised to know that there is no such organization in HK. Incidentally, I found your blog on goggle and clicked in.
According to x-ray analysis and clinical assessment, my six-month-old baby boy, Nathan, suffers from achondroplasia. I wish to introduce Nathan to other kids who have similar condition and know other parents who face the same challenge with us. I hope we can meet some day.
Serene
Serene - are you in Hong Kong? If so, please email me!! (if not, you are welcome to email me as well, but ESPECIALLY if you are in Hong Kong, I mean) - my email address is nicolejoy81(at)gmail.com
ReplyDeleteHi Nicole,
ReplyDeleteI emailed you just now.
Serene