I met Avi, Dikla, and Tamar Starr last year at the MSUD Symposium in Raleigh, NC. Tamar, classic MSUD, was 2 ½ at the time, and they invited me to come to Israel and stay with them for a year. I laughed it off, thinking they were just joking, but I gave them my number so we could keep in touch. Avi messaged me on WhatsApp a few times, sending me pictures and telling me how they were doing. One day in early June, he called (at a time when the time difference wasn’t so bad) and asked me when I was coming to Israel to stay with them. I was surprised, I hadn’t expected him to really mean it, but he said I should come for 2, 2 ½ months and that I could stay at their house with them. I gave the phone to my mother because I didn’t know what to do, I had never considered the possibility that I could agree to a vacation like this without seriously planning it in advance and figuring out logistics like what I would do if I got sick, or how I would get my formula there. My mother got off the phone with him and it was immediately decided that I would go to Israel for 6 weeks. I was blown over. It was quite a whirlwind, I have to say, to be able to agree to something like that so quickly.

I had to go soon since my school started August 28th. So within the next two weeks we got a ticket for me to fly to Israel on July 6 arriving the next day, and coming home on August 15th. My doctor Melissa Wasserstein, MD was supportive of my trip. She called the metabolic doctor that Tamar uses, Dr. Stanley Korman in Jerusalem, to let him know I was coming in case something happened, and between her and my parents, I figured out how to get enough formula in advance so I could leave the country with close to two months’ supply.

Unfortunately I ended up getting sick on the fourth of July, and my levels were too high to travel so I had to push my flight to Israel back a few days. My levels came down quickly, and I was cleared to go by my doctor.

I was all kinds of nervous on my way to the airport.

It wasn’t flying by myself that scared me, I’d done that plenty of times before. What if they didn’t like me?What if I couldn’t communicate with them? I only knew a few words in Hebrew, and they had 3 kids other than Tamar, who by now was 3 1/2, none of whom knew English. What if I got there, and was there for a week or two, and they realized they made a mistake and didn’t want me there? But everyone was all smiles when I got there and I soon found out how to communicate (more than I first could) with their older kids, Noa and Maor, who don’t have MSUD, and Tamar, for the most part. I was able to talk to Noa (9 years old) with the help of Google Translate, and Tamar using the few Hebrew words I knew. Most of the time I could figure out what they were saying and some of the time I had to ask Avi or Dikla. Their youngest, Roi, was easiest because he was only 2 months old. I learned a few words every day (or almost every day) while I was there.

The part that sent me panicking, for a bit, was the food. Avi and Dikla count protein for Tamar, while I count leucine. They don’t have a book that tells them what is what, they just go by the food labels on wrappers. While I sort of do that, too, the food was a bit different in Israel and I got very confused, very fast, with how I was supposed to eat. With time I became more comfortable.

Their house was very nice in Ashdod, just a couple blocks away from the beach on the Mediterranean Sea. Ashdod is a big city, and I’m sure I never even saw half of it. It was also very, very hot. The first weekend I was there, we went to Jerusalem where we saw Sarah and Yossi Dworcan from Florida, who were in Jerusalem with their son, Eli (2, Classic) Other Israeli MSUD families came, too. It was us (me, Tamar, Noa, Maor, Roi, Avi, and Dikla Starr), Eli, Sarah, and Yossi, Shiri and Miki Widezki and their daughter (Noy, 14, Classic) and two sons, an Indian couple named Hetal and Jet Gheravada with their son (Krish, 4 months, Classic), and Faigy Paretzky and her son (Yona, 7, Classic). It was a lot of fun and wonderful as always to meet up with MSUD families!!

The Starrs also drove me into the Negev (desert) an hour away to Kibbutz Dvirah where Naftali and Eden Zer, and their daughter Rotem (16 months, Classic MSUD) live. I loved being able to visit them, and soon I went back by train so I could spend a few days with them. I also took the train to Haifa to spend a day with my visiting cousins, and from Haifa I went to Tzfat to stay with Yuval (22, Classic) and her older brother and mother at their house. Avi had told everybody I was in Israel from the minute I landed, and gave me her mom’s number so I could get in touch with her and figure out travel arrangements.

My mom wanted to take me to Israel but wasn’t able to because of work. Instead, she came on August 4th, about two weeks before I was going to leave. We stayed in Ashdod for a couple days and had a wonderful Shabbat dinner with the Starr family. Then we went down to the Kibbutz because Eden wanted to meet and talk to my mother. We have cousins who live in Metulla, up north on the border of Lebanon, whom we haven’t seen in a while and we traveled there to visit them. Our cousin Yael told us all about how the family moved to Metulla in the late 1800s and cultivated the land to grow the beautiful olive trees, peach tress, fig trees, and apple trees that are there. We went to Haifa and did the Bahai’i Gardens tour (forgetting to bring water bottles!), and I showed Mom a restaurant there I had been to and liked (the hummus was awesome!).

Next we went to Jerusalem. A family friend lives there, and he was really wonderful to us, driving us places, and letting us use his apartment so I could make my formula using the blender Avi and Dikla had let me take on the road with us. He also picked up the Gheravada family and brought them to his apartment for tea. It was wonderful getting to talk to them and know them better and understand more of what was going on with them. Noa Peleg (17, Classic) and her family traveled to Jerusalem to see us and treated us to a wonderful dinner in a restaurant overlooking the Old City. In Tel Aviv, where we stayed next, Miki Widezki arranged for us to stay in a hotel, and the entire family came to spend an afternoon with us there. And then, sadly, my trip came to an end.

It was wonderful to see how well connected these families were, to spend time with them, and talk about how we were all doing. I can’t wait to go back!


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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