Remembering Marisol

A family tragedy inspires breakthrough research at TAU

Tom O'Brien with his daughter Marisol
Tom O'Brien with his daughter Marisol

Marisol O'Brien, the youngest of four children Patricia and Tom O'Brien of Boston adopted from Latin American countries, "could light up a room," her father remembers with a smile. But at the age of three she started to lose her ability to walk, and the O'Briens were not prepared for the devastating diagnosis of a very rare disorder that has no cure. Victims of Vanishing White Matter (VWM) disease, they were told, rarely live longer than their early teens. "It was every parent's worst nightmare," he says.

"Most families would feel that they couldn't let this happen to their child," O'Brien says, and they were no different, doing whatever was necessary to help Marisol. "We took her everywhere, even though Boston is a very strong place for medical research and has wonderful doctors. We even took her to Lourdes — a long and difficult trip for us, as you can imagine."

One Boston doctor suggested that the O'Briens contact Dr. Rafi Shiffman, a researcher with the National Institutes for Health in Bethesda, MD. "I wrote Dr. Schiffman a long email about VWM, about where Marisol was in the progression of the disease and her symptoms, and at the end I asked, 'Can I come and visit you?' He sent me a one-word reply — 'Yes.'" Although Dr. Schiffman was not able to offer much hope in 2003, he did take some hair, blood, and skin samples and asked the O'Briens if he could share them with a collaborator.

A call from Tel Aviv

Marisol and Patricia O'Brien
Marisol and Patricia O'Brien

A year later, Tom O'Brien was contacted by Schiffman's collaborator, Prof. Orna Elroy-Stein of Tel Aviv University's Department of Cell Research and Immunology, whose research focuses on VWM disease. In Boston for a conference, Prof. Elroy-Stein, a mother herself, sat down with O'Brien to talk about the disease.

"We talked for a number of hours about Marisol and her condition," O'Brien remembers. "Prof. Elroy-Stein had just begun to create these laboratory mice based on Marisol's very unique DNA pattern. She's a very kind, wonderful person — a beautiful human being. There are a lot of researchers you meet in this process who are specialists and very smart, but don't always have the best bedside manner."

Unfortunately, Marisol O'Brien died on December 20, 2008.

Meeting Marisol's many mice

The O'Brien family
The O'Brien family

The family continued to support Prof. Elroy-Stein's work through the nonprofit Foundation for Marisol's Journey, which they started within days of Marisol's death. But it wasn't until 2011 that O'Brien met with Prof. Elroy-Stein a second time, when he came to the Tel Aviv University campus as part of a group of Boston businessmen led by Massachusetts Gov. Deval Patrick.

"Tel Aviv University has a beautiful campus, and I visited Prof. Elroy-Stein's lab there on a beautiful sunny day," O'Brien remembers, his voice breaking slightly. "I felt Marisol's presence with me as I walked into her terrific lab, filled with kind and energetic young people. She took me down to a room where the mice were — there were thousands and thousands of them! It was amazing! She's conducting dozens of experiments with these mice, and she's on a path to truly understanding what happens with this disease."

The Foundation for Marisol's Journey remains committed to raise funds to support Prof. Elroy-Stein's research at Tel Aviv University — and Marisol's spirit continues to animate not only the O'Briens, but also all of the researchers at the TAU lab. "Marisol plays a role in our daily lives — she's done so ever since she came to us in 2000," O'Brien says. "Orna Elroy-Stein understands that. She's a superb research doctor, but she also gets the personal side — why this work is so wonderful for us."

More information about the Foundation can be found at its Web site:
http://www.marisolfoundation.org

 

 

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