A mom of a one-and-a-half-year-old daughter with CMTC describes her experiences in the following story.

When people see her daughter for the first time they make comments like:
"Wow, what’s the matter with her? Did she fall? "
"Sorry that she has that,"
"Can anything be done about it so that you do not see it anymore?"
"We've never seen anything like this ..."
"Will she have physical limitations? Oh no?"
"Always those weird stares and those questions ...," the mother sighs.



She continues: "As a mom of a one-and-a-half-year-old daughter with Cutis Marmorata this is enormously painful for me and I am really worried about the future! We live in a world where looks are everything, how regrettable! Currently my daughter has no problems but I don’t want her to be bullied in the future and I also don’t want her to feel inferior to other people. I am not only worried by this, but also by the possible complications that could arise.

Thorough investigation

The mother lives with her family in Belgium and she has the impression that people here know very little about CMTC and the Klippel-Trenaunay syndrome.
"We are receiving medical treatment in a university hospital. There has never been taken a picture, never a thorough investigation into what is going on inside the leg and hand. As a mom I am worried because we did not really get a lot of information, they always say we have to wait and see.
A mother does not want to hear this, a mom wants to know what can be done so that her child receives the best care and will get as few complications as possible.
Is it really CMTC or the Klippel-Trenaunay syndrome? No one, in my opinion has really looked at our daughter! "

CMTC-OVM association

"Since as a mother I am very much involved and I have a heavy feeling of guilt, I went looking for a solution and ended up with the global Dutch association CMTC-OVM. I am tremendously glad that I found this association, the family day was very useful and gave me a good feeling. I could talk to other mums and dads. I could ask questions to the founders, overall it was a positive experience for my! I am so glad I met you!

Psychological assistance

I realize fully that as a mother, I also need help to handle it. I'm still working on it and am very afraid of the complications. This has to change because I certainly don’t want to give complexes to my child, I want my child to be strong and super happy with herself. So I am still looking for psychological help to handle it. I hope to find this in the Netherlands."