Oct 10 2008
31 for 21: Meet Addelyn
In the winter of 07 we got a call at IMDSA from a parent who had just had twin girls–Alex and Adde. Adde (Addelyn)was born with mosaic Down syndrome.
The babies had just recently been born and I was astonished by the strength of this parent. Most parents who just get the news of this diagnosis are usually in too much shock to call us right away. Most of them wait for a few months before they call. But this mom said, “Ok. She has it. What do we do next?”
When I met Brandy and her beautiful baby girls at our 07 Research & Awareness Conference, I could immediately see that Brandy was one of those parents who is a “take-charge” kind of person. Before the conference was over, she asked if she could help with our 09 conference. I explained that it was, indeed a lot of work, but I was willing to talk with her about it. Well, since that meeting, Brandy has become IMDSA’s Fundraising Officer and she is currently coordinating our 09 Research & Awareness Conference to be held in Cincinnati, Ohio next July.
Brandy is, without a doubt, a very busy person! She also has two older sons, a house to keep, a husband to care for and I imagine a never ending supply of dirty laundry to wash, dry, fold and at some point, put away!
I have had the opportunity to watch Adde grow into a beautiful little girl. She is so proud of all her accomplishments and so am I!
As any parent of a child with MDS, Brandy can get frustrated when Adde isn’t meeting a milestone. And, with a twin sister to compare, that makes it a little harder. But, Brandy is always a trooper and she knows that Adde will do it in her own time.
Today I am going to share a miracle with you! Now, some who do not have a child with MDS or Ds would say, this isn’t much of a miracle. But for us…. it is! Because as a parent of a child with MDS, you don’t take anything for granted and you see EVERYTHING of the true miracle it really is!
The video below is of Adde just last week. She is 19 months old now. I don’t want to spoil the miracle, so I wont say anything at all! But after you watch it, please leave a comment and let us know what you think!
Way to Go Adde! I am so proud of you!
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