Visit to St. Louis

Certainly, St. Louis has become an extremely important city in my life because it is where I met people who welcomed me with love and open arms. These people struggle fiercely every day for a cause that, unfortunately, affects me and people they love.

Well, who am I talking about? Before paying a tribute to Dr. Fumihiko Uranus, I would like to tell you this story from the beginning. My neurologist from Porto Alegre, Doctor André Palmini, had been communicating via email with Doctor Fumihiko about my case for a few months. He has been conducting a medical research on Wolfram Syndrome in the city of St. Louis since 2010. I had never imagined getting such a warm-hearted response from an American doctor. One week after my first contact with him, we scheduled a “Skype meeting”, and once again I was surprised by an extremely helpful and available person, who spent about 40 minutes on Skype with me during a busy weekday. After signing the registration to participate in his research and exchanging many e-mails, we scheduled a meeting in St. Louis for May.

In the midst of all these events, my father told me about a foundation in St. Louis called The Snow Foundation, founded by the mother of an 11-year-old girl with the syndrome. I got very interested, I thought we could meet, exchange experiences and, in a way, help each other. So I went to the Snow Foundation site, looked for a contact email, wrote my history and in less than a day I received an answer from the founder herself, Stephanie Snow Gebel, an incredibly caring and friendly person. We agreed to have lunch in St. Louis so we could meet and exchange ideas.

You might have an idea of how I was feeling when I woke up on May 9, right? The day of the meeting with doctor Fumi and lunch with Stephanie! My parents and I woke up earlier than necessary and when we went downstairs to the hotel lobby, there he was, half an hour early. Immediately I introduced myself and introduced my parents, and then Leticia came, a Brazilian psychologist who was studying in St. Louis and who helped us during this great day.

We went all have some coffee and a very nice conversation that lasted about 30 minutes. Soon after, doctor Fumi took us to Washington University where his office and research lab are located. When I got there, there were butterflies in my stomach. Photos of other patients with Wolfram on the wall graced the office, so I felt comfortable. That’s when I thought “yes, I’m part of this group”. For about two hours, we talked and discussed many possibilities. My parents and I, Fumi, Doctor Palmini on Skype, Leticia helping out as well, everyone debating which way would be best for my health. But, yes, everyone said: “The final decision is yours, Rafa.”

Afterwards, we all went to the “Wildflower” restaurant to meet Stephanie.
When we arrived, she was already waiting for us, a beautiful, strong and heroic woman, who received me affectionately. We talked a lot, I told her about my treatments, my experiences, my problems. And she told me about Raquel, her beautiful and courageous 11-year-old daughter, who faces many daily difficulties as a result of Wolfram. It was a wonderful experience!

Fumi and Stephanie introduced me to many people from the Wolfram family, including two Brazilians. Steph also introduced me to Pat Gibilisco, who included me in the WS Families group, where I was received in an incredibly warm way and I got to know different stories around the world. There are so many WS Families who live similar realities, who face similar difficulties, though each one has its own particularity. Like Steph said to me: “We are all in the same boat, but it is a good boat to be in because everyone is so supportive, caring and we all are empathetic”.

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