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Who We Are

The Foundation for Marisol's Journey

We are the parents, family, friends, and caretakers of Marisol Liliana O’Brien. We have been inspired by the example of Marisol’s eight years with us to love more deeply, to live with greater purpose, and, through our service, to strengthen our community and the lives of those most vulnerable.

Upon Marisol’s passing in December 2008, thousands of people reached out to share the ways in which their lives were influenced by Marisol’s courage and love.  Many have sought a continued effort to honor Marisol and the joy she brought to their lives.  We have been moved by the generosity of those who have contributed to this foundation, and we have been gratified by their encouragement.  In Marisol’s memory, and with deep appreciation for our friends and family, we created The Foundation for Marisol’s Journey.

Our Leadership

Patricia J. O’Brien
Director

Thomas N. O’Brien
Director

Michael N. Sheetz, Esq.
Clerk

Jane Driscoll
Director and Treasurer

The Foundation for Marisol's Journey

Our Inspiration

Marisol was born in Guatemala City, Guatemala on April 30, 2000.  She was adopted into the O’Brien family of Lexington, Massachusetts and came home on December 12, 2000.  From her first smile, she captured the hearts of her parents Tom and Patricia, brothers Lucas and Tomas, and sister Nina.

Marisol was born in Guatemala City, Guatemala on April 30, 2000. She was adopted into the O’Brien family of Lexington, Massachusetts and came home on December 12, 2000. From her first smile, she captured the hearts of her parents Tom and Patricia, brothers Lucas and Tomas, and sister Nina. We named her Marisol. In the spanish root, her name means “sea” and “sun”, and she was the very best of both: a beaming ray of radiance together with the beauty and symphony of the ocean as it stretches to the horizon.

Marisol’s love for music, hugs and family outings to the beach brought incalculable joy and harmony to our lives. Her deep-from-the-belly giggles echoed in our ears from morning to night.

When Marisol turned three, her beautiful life – and that of our family – was forever changed when she was diagnosed with a form of leukodystrophy known as “CACH”. CACH or “Childhood Ataxia with Central Nervous System Hypomyelination”, and also known as “Vanishing White Matter Disease”. This little known disease cruelly afflicted our happy and active child. 

Over the next five years, CACH Leukodystrophy robbed Marisol of her ability to walk, talk, speak, or swallow. By the end of her life, she was confined to a wheelchair, immobile and fed by a feeding tube. Despite the increasing difficulties that marked her days, she maintained a constant smile and a happy disposition. She found new ways to share her love for us and for an endless stream of doctors, nurses, caretakers, family and friends. At 3:00 PM on December 20, 2008, surrounded by the love of her family, Marisol lost her valiant fight to live.

Marisol was a cherished blessing in our lives. Despite the brief length of her years on earth, she impacted the lives of thousands of people – many people dear to us and many people we do not know. We are grateful for your continued prayers and messages of support. You have sustained us. Your reflections on Marisol helped motivate this foundation in her memory.

Marisol inspired us to love others, to remain committed to our faith and to bring comfort to families that struggle to manage the effect of childhood neurological disorders. Throughout her courageous battle, our family was inspired and moved by the love and selflessness of others. Those acts of human kindness and expressions of faith and friendship guide this foundation. 

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