It was early morning in Anchorage, Alaska. I opened my MSUD e-mail account like I do every day. It's become a routine, and the MSUD eGroup is a wonderful source of knowledge for me. There were a few messages that day from members of the group, but one subject in particular caught my eye. It said something like "family from Spain needs information." Seeing the name of my country of origin in the subject made me click on this message and read it right away. The Bazan Martos family from Cadiz, in the southern part of Spain, was asking for information and help.

The Martos family had a three-year-old adopted daughter, Hindou, with MSUD. Without hesitation, I offered to share the little information I had about MSUD. I mentioned that I would like to exchange e-mails with them and was willing to translate information that was shared on the MSUD eGroup.

I received a reply the next day, and from then on we exchanged messages on a daily basis, often several times a day. It is a wonderful feeling of relief to finally establish communication with a family who share the same language, culture and a similar situation. Jeronimo and Charo, the parents, told me about their three biological daughters, Laura, Sonia and Elena, and their youngest daughter, Hindou, who came to them when she was ten months old. They are a wonderful family who are always just a click away. We chat about our families and routines, laugh together, exchange low protein recipes, share concerns and help each other with our MSUD experiences. They even told me how to make a low protein version of one my favorite dishes from Spain, "tortilla de patata."

The Bazan Martos family provided us with information about MSUD-related issues in Spain. They told us where to buy low protein products in that country and how to order them ahead of time. This is going to be a big help when we pack for our trip this coming summer. Marlon, our son, and I will be spending two months in Spain, and my husband, Navid, will join us there for a month. We are excited about spending a full summer with my family, but it is always stressful to have to think about all the special supplies we'll need during our vacation.

Recently we decided to try chatting with our new friends online using webcams. We had a wonderful time. Our little children, Marlon and Hindou, both with MSUD, even played peek-a-boo thousands of miles apart. We were all thrilled to see our children's big smiles. The children have a lot in common, and for the first time, they had the opportunity to play with each other and enjoy themselves despite the distance. We are making plans to meet the Bazan Martos family in Spain this coming summer when we go to visit my family, and we are really looking forward to it.

We never would have met this family had it not been for the MSUD eGroup. Our friendship grew with the exchange of communication through the Spanish chat group, which we started a few months ago. This MSUD Spanish eGroup is available for all families and adults dealing with MSUD who speak Spanish. To access this group, e-mail me at: This email address is being protected from spambots. You need JavaScript enabled to view it..


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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