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Special international friendships thanks to CMTC-OVM

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Special international friendships thanks to CMTC-OVM

Report from our PAs from Germany and Austria

Niklas and Eric are both seven years old and also both have the rare blood vessel disease DCMO (Diffuse Capillary Malformation with Overgrowth). It appears as spots on their legs and back and causes them to have growth abnormalities in their legs and internal organs.

Niklas lives with his family in Austria – Eric lives 950 km away with his family in Germany. In October 2016 the families met for the first time during the global CMTC-OVM members conference. Thanks to the CMTC-OVM organization, families from all over the world have the opportunity to come together in the Netherlands to share information about DCMO as well as other blood vessel abnormalities.

In July 2018 we met again at the family day in Efteling (The Netherlands). The boys were then two years old and we as parents could talk to each other on the playground for a long time while the boys were playing. We exchanged phone numbers and from then on we were there for each other when we had questions about our boys’ illness.

In March 2020, Covid-19 entered all of our lives, making face-to-face meetings in different countries almost impossible. However, we mothers kept in touch and so the idea was born for Eric and his family to visit us in Austria. In March 2022 it was finally time and we spent 3 wonderful days together in Austria. It was important to us that the boys could see that they both had some marks on their legs. So we spent a whole day in the thermal baths – where the boys first talked about their similar spots on their bodies.

In August 2022 there was a reunion in Germany. The boys were just as happy as the adults were. After this second meeting we can say that a great friendship has developed!

For the members, there was another conference in 2022 in Leusden (the Netherlands) and the first patient advocacy training was organized. Patient advocates from Canada, Germany, England, Austria and Spain gathered for 2 days to learn how we can best represent our non-profit patient organization in our countries and support patients. A very loving friendship developed between Júlia and Niklas. Niklas and Júlia were inseparable for 4 days. It has now been 3 months since meeting and the two are still talking to each other frequently – sending each other postcards, small video messages and even gifts. We are already looking forward to seeing you again this year.

Thanks to the CMTC-OVM organization, the children have become aware that they are not alone with their special skin marks. We are convinced that they will gain a lot of strength from this in the coming years. At this point, they in general accept their illness and their special appearance quite well. When the time comes for that to change, they will see that they are not alone. We are very grateful for this opportunity and these new friendships!

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