Friday, May 13, 2011

I want to be like Mike!

We had another appointment up at the hospital this week.  It didn't go as we had hoped and now we are finding ourselves having to make some really tough decisions for Maaike's future, but more of that later.  One good outcome of our appointment was a little more research that brought us to two beautiful boys who are just like our Mike.

Liam is just a few months older that Maaike and his parents have started a foundation to pave the way for more research for cystic hygroma.  We have been emailing back and forth with his parents over the last couple of days which has been tremendously therapeutic and informative.  To find out more about Liam and their foundation go to

 Kody lives in England and is at least a year older than Maaike.  He has already undergone some of the suggested treatments for cystic hygroma and we are anxious to learn more.  You can learn more about Kody at

1 comment:

  1. Hi! I found you via a friend of your sisters (Mo) and I love reading about your sweet and beautiful Maaike. We have a daughter who is just a couple months younger than Miss M and was born with super rare (as in 16 documented cases ever I think?) genetic disorder, which boils down to the fact that her limbs are all underdeveloped, misshapen, etc and she has a very small stomach and gets night feedings though a g-tube in order to help her get enough calories. While I would never would have wished this for our daughter, it's amazing how much I love being a special needs mom. I love how it's opened my heart to other families with sn's children and how I view so many things differently. So thanks for sharing your beautiful family with us. Feel free to check out our blog as well,