Myra Sack and her husband Matt were very lucky. They had fallen in love with the right person, had work they were deeply committed to and had a new baby. Into the middle of their charmed life came the worst possible news; their perfect daughter had Tay-Sachs disease. She would live a very short life. A mistake in the testing they had received for Tay-Sachs blindsighted them. Reeling from the news and immersed in the question of how they could possibly live out this time, they decided they would celebrate Havi every day of her life. And every Friday they would gather friends and family in their home for Shabbirthday. They would love her and cherish her and hold her as if each Friday was both a holy shabbat and a wonderful birthday party. They had no way to imagine how they would grieve her, but they decided to live fully with her as long as they could with whoever also wanted to grace this beautiful child with their love. And with that simple promise, they found a way to put one foot after the other.

Myra Sack is a certified Compassionate Bereavement Care Provider through the MISS Foundation and founder of E-motion, Inc., a non-profit organization on a mission to ensure community is a right for grieving people. Her recently released book, 57 Fridays- Losing our daughter, finding our way, shares the story of Havi, her first child, who was diagnosed with Tay-Sachs disease at 15 months old. She died a little over a year later, after changing everyone who loved her through that deep, crushing and meaningful time. Subsequent to this interiew, Myra founded E-Motion, a non-profit dedicated to bringing grievers together to walk, run and share. Myra lives with Matthew Goldstein and their two other children in Jamaica Plain, Massachusetts.