Brindusa, Debbie, Shay & Leo
Posted by Bryan Jones at 7:31 PM

This note and photo were submitted by Marilyn Cummelin.
"The enclosed photo is of Brindusa Curca, Debra Brooks (with Shay her wonder dog) and Leo Curca. Debbie and I, with tremendous support from Jeanette Navia's Marfan List participants, brought Brindusa and Leo to last year's NMF conference at the Beverley Hilton, from Romania. As you may well assume, the doctors in Romania really have very little knowledge of Marfan; therefore, Brindusa and Leo were unable to get proper care or treatment. Although the news was not good for Brindusa, as far as her aorta goes, it wasn't too bad for 13-year-old Leo. Brindusa is now faced with finding a surgeon in Romania for her aorta. Although that may be very difficult for her to do, it is still better that she be aware of the situation and be alert to any potential problems, than living not knowing what is going on and the very real dangers that presents.

This was their first trip to the U.S. and, despite the bad news, they had a marvelous time. Leo got to know several other kids his age with Marfan; while Brindusa was able to make some very good and lasting friendships within the Marfan community. She also met and was graciously hosted for part of the time with an ex-Romanian living in LA.

Debbie and I finally got to meet face-to-face. We had been corresponding on the Marfan List for a while. She and I will be friends from this point forward too.

The NMF (www.marfan.org) and the Marfan List are two extremely important and valuable resources for anyone needing more information about Marfan. Information that could change your life."