April 5, 2017

Zoya's gift

Inspired by their little girl's dignity in dying, family creates a palliative care fund to teach health care providers to see the big picture of healing

Toward the end of her battle with Ewing sarcoma, 5-year-old Zoya Wajahat got a visit from an adult friend who attends her family’s mosque. The friend is “very involved in fundraisers and charity, always doing good things,” explains Zoya’s mother, Mariam Siddiqui. She brought one of Zoya’s favorite sandwiches, and the two chatted and played together.

“The friend texted me later that day, after she left,” Siddiqui recalls. “She said, ‘Zoya gave me $20. She took it out of her red envelope [of spending money; it contained $26 total] and she said, please put this in the charity box for me.’

“She asked me, ‘what do you want me to do with this money? Doesn’t she want it for something?’ I said, ‘no, it’s OK.’ Of course, Zoya didn’t mention this to me.”

That was Zoya: giving and teaching to the end of her young life—and beyond. In her final few days, she fretted to her grandmother about her mother’s fatigue. “She said, ‘Naano, let my mom sleep because she is very tired,’” Siddiqui recalls. “She couldn’t sleep herself, but she wanted me to sleep.”

So it’s fitting that the initiative her mother, father, and sister started, the Zoya Palliative Care Memorial Fund for University of Minnesota Masonic Children’s Hospital, has inspired compassion and generosity in donors around the globe—from Minnesota to Pakistan, Australia, Dubai, and England. Their quest to improve care for dying children and their families grew out of Zoya’s pronouncement that she wanted to be a nurse because, she said, “I know how much it hurts when they put a needle in my port. I will make sure that no child will hurt anymore.”

Through her diagnosis, chemotherapy, surgery, a bone marrow transplant, and radiation, Zoya’s spirit—her joy and loving energy—helped sustain her family, and it has continued to guide them since her death in April 2015.

Siddiqui, her husband, Wajahat Khalil, and their older daughter, Maria, now 13, say their journey with Zoya made them “witness to grace” and deepened their sense of purpose. One day, Maria wants to become a doctor like her parents; she’s interested in pediatric oncology.

“To witness the dignity of how she left us—I pray that other parents don’t have to go through this, but it gives you deep clarity about what we are doing here,” says Khalil. Their mission, he says, is to help educate physicians, nurses, social workers, chaplains, and others who care for terminally ill kids about seeing the bigger picture of healing.

“Healing can be understanding and appreciating death,” he says.

Naomi Goloff, M.D., the lead pediatric palliative care clinician for University of Minnesota Health, agrees. “Most people don’t want to hear about children who are dying. But just because it’s difficult doesn’t mean [that quality care] is needed any less,” she says. “There are patients you can cure, and that’s wonderful. But when kids can’t be cured, you can still help bring healing.”

The Zoya fund will support teaching future providers how to give “open, honest, compassionate, family- centered care” to dying kids and their families.

“This,” says Khalil, “will be Zoya’s gift.”

Make a gift to the Zoya Palliative Care Memorial Fund at

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