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"An inspiring story of hope, community, and love-in place of unrelenting grief. Myra Sack is a new mom, married to Matt, the love of her life. They live in Boston because Matt's residency in internal medicine takes them there. Myra is 30 years old, completed her MBA. They've bought a house. Life is unfolding beautifully. Until one day their beautiful year-old daughter Havi is diagnosed with a fatal neurodegenerative disease called Tay-Sachs. Then Myra and Matt discover that, despite extensive pre-conception genetic testing, an error was made, making this fatal diagnosis possible. Havi has only a year to live. Against all advice and norms, Myra and Matt decide to celebrate Havi's short life rather than intervene to prolong it. They vow to show her as much of the world as they can, embarking on a journey that begins on the California coast and continues back to Boston, surrounded by friends and family who relocate to be in Havi's orbit. Tapping their Judaism, they transform Friday night Shabbats into birthday parties-'Shabbirthdays'-to replace the birthdays Havi will never have"--
About the author
Myra Sack graduated with a B.A in government and All-American Honors in 2010 from Dartmouth College, where she captained the women’s varsity soccer team. She earned a post-graduate Lombard Fellowship in Granada, Nicaragua with Soccer Without Borders. Following her lifelong passion for sports and social justice, Myra joined SquashBusters, Inc., in Boston in 2013, serving as their Chief Program and Strategy Officer. Myra has an MBA in Social Impact from Boston University and is trained as a Certified Compassionate Bereavement Care provider by Dr. Joanne Cacciatore. She serves on the Board of the Courageous Parents Network and is the Founder of E-Motion, Inc., a non-profit organization with a mission to ensure community is a right for all grieving people. A writer, coach, and activist, Myra and her husband Matt, live in Jamaica Plain, MA with their second daughter, Kaia, and son Ezra. Myra’s oldest daughter, Havi, passed away on January 20, 2021 of Tay-Sachs disease.
Summary
“A wondrous, hopeful, heart-breaking witness to one of the darkest journeys imaginable… This will be one of those rare books that people re-read, think about, and encourage others to read.” —Bruce D. Perry, M.D., Ph.D, author, with Oprah Winfrey, of What Happened to You
“I love this book. I absolutely could not put it down. It is beautifully written and cuts to the very heart of life and love: The story of Havi’s short, beautiful life and early death from Tay-Sachs is harrowing, heartbreaking, uplifting, profound and sometimes funny. Havi will charm the socks off you.”—Anne Lamott
Life is unfolding as planned for Myra Sack and her husband Matt until their beautiful year-old daughter Havi is diagnosed with Tay-Sachs, a fatal neurodegenerative disease, and given only a year to live. Myra and Matt decide to celebrate Havi’s short life and vow to show her as much of the world as they can, surrounded by friends and family who relocate to be in Havi’s orbit. Tapping their Judaism, they transform Friday night Shabbats into birthday parties—“Shabbirthdays”—to replace the birthdays Havi will never have.
Foreword
- Strong social media campaign. We’ll launch with a Facebook Live event.
- Extended galley mailing.
- Goodreads giveaway.
- Library Thing giveaway.
- IndieBound Advance Access.
- Special outreach to Jewish media and grief counselors.
- Events in Boston involving literary, scientific, and Jewish communities.
