An amazing and rare story…

Rare children

1996: “Why don’t you make a website?” Stephanie e-mailed me. She did it herself and explained that is was not very difficult. So I did. I knew, as Stephanie did, that the Internet was very helpful in finding information and other parents with children with a very rare chromosomal disorder. Moreover, if you don’t find a child with exactly the same rare chromosome disorder, it is good to be in touch with someone in the same situation ánd the same drive to find out more. In those years we had a lot of contact and ideas and shared it via e-mail.


In January 1997 I published my first website about the European Chromosome 11q Network, now Chromosome 11. The network still exist, I am not very active anymore, but  Stephanie st Pierre is still active in her network and the website. We still have contact. Hardly via e-mail but mostly through Facebook.

What is amazing:

  1. Our first contact is via snailmail in October, 1995, thanks to a list in a Newsletter from Unique were our daughter Geertje (born 1980, died 2000) was listed. Stephanie decided to write me on behalf of her daughter Maia, born 1995 with a chromosomal disorder that seemed similar.
  2. We both used all means to find other families with a disorder on chromosome 11 and internet made it so much easier!
  3. We started mailing in 1996.
  4. Stephanie started the 11;22 international network and later chromosome 22 central, my husband (Rob Jongman) and me started the European 11q network and we stayed in touch because we became (online) friends!
  5. We already adopted children. Stephanie and her husband adopted two children from China.

Amazing meetings

The story continues with another mother. Meet Miranda Kruijer-Bruin and her husband, they adopted children from China and South Korea, one of them is Faye. In the beginning of 2012 Miranda was looking for an e-mail list on the internet for parents with children from the same children’s home as Faye and happened to see a picture of Jaida, Stephanie’s daughter. She saved the picture and was not able to do more with it at that moment. Some months later she joined Facebook and found Jaida and the St Pierre family. Seeing more and more pictures of Jaida she noticed a lot of similarities to Faye. She did send an e-mail and the families got in touch. In the end the families decided to have DNA tested and it turns out that the girls are sisters! They met in Canada in 2012.


What is amazing:

  1. Another mother used an opportunity to find out information; she checked the Internet.
  2. Thanks to FACEBOOK she found the sister of her daughter.
  3. The girls met and are very very happy as are their families (and friends).
  4. This family lives in the Netherlands, like we do!

Of course I read the story of the girls on Facebook and found it amazing. But there is something in it for me too: Stephanie and Jaida will be visiting the Netherlands in august 2014. So finally: after nearly 19 years I will meet my online friend Stephanie St Pierre!

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