After Losing Her Daughter to a Rare Disease, Yaal Mes Turned to Spiritual End-of-Life Care

Yaal Mes, 64, a spiritual care companion and co-chair of the Spiritual Care Association, has turned a family tragedy into a career helping dying patients and their relatives. Three and a half years ago, when her first granddaughter was born on the first night of Hanukkah, she rediscovered a children’s book she had written in 2000, a year after her daughter Eden died. The book, titled “Me’ushara,” was finally published now so her grandchildren can have a story about the child who was “normal until age two, and then the sky fell.”

Eden was diagnosed in 1997, at age two, with a rare genetic disorder called ADAT syndrome, caused by a mutation in a gene tied to protein production. Mes said the disease was so rare that the odds of two carriers meeting were about one in 10 million. Their daughter Sahar carries the gene, while their son Rom does not. There is now prenatal diagnosis, but no cure. Mes recalled how Eden lost motor skills, how doctors initially missed the problem, and how the family felt helpless in 1997, before Google and before modern genetic knowledge. She went to Columbia University in New York with her brother, genetic engineer Dr. Alon Heferfeld, seeking even an experimental treatment, but was told only 12 children in the world had the disease and there was nothing to do.

Mes said that after Eden’s death in winter 1999, she chose to “breathe her in and also say goodbye,” while still caring for two healthy children. Her father, former Histadrut chairman Haim Heferfeld, got a ventilator for Eden and later cried for the first time when he understood she would die. Eden died at home after Mes, with family around her, disconnected the machine near the end so she could hold her daughter as she took three final breaths. Mes says Eden became her first teacher in spiritual care, and that today she often works outdoors with patients because nature gives them strength.

After Eden died, Mes changed her life: she chose Eden’s burial site, ordered a small coffin painted with Mickey Mouse, left childcare work, studied organizational consulting, and spent ten years unable to enter the children’s area of the kibbutz. She and her husband, Tzomer, later divorced, something she links to the shared trauma of having a child with a genetic illness. Today she is in a third long-term relationship. Sixteen years ago she formally trained in spiritual care, logging 400 academic hours, an internship and a national certification exam, and now often supports families facing terminal illness. She says she even helped one grieving family plan a quieter burial after remembering the deafening sound when Eden’s coffin was lowered into the grave. Recently, her son Rom married Ariel, Eden’s childhood best friend, in a wedding Mes described as magical.