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Pediatrician and Roadmap parent partner Dr. Tasha Faruqui’s life changed twelve years ago when her second daughter, Soraya, was born with a rare medical condition similar to amyotrophic lateral sclerosis (ALS). Tasha notes that this places her family in the difficult position of trying to navigate how to live—and live joyfully. Parenting a child with an undiagnosed condition who is now in hospice care has driven Tasha to become a passionate advocate for families of children with complex illnesses and those with a limited life expectancy.
Tasha has shared lessons learned about special needs parenting, anticipatory grief, and equity in medical care for pediatric trainees and program directors, Grand Rounds, various pediatric meetings, and Make-A-Wish events. A hallmark of every lecture she gives is spreading her family motto: “Suck the Joy Out of Life.”
Tasha chronicles her family’s challenges and triumphs with remarkable vulnerability on her Instagram page, @thefaruqui5. Through sharing honest depictions of anticipatory grief, she has created a space where those navigating this isolating experience can find solace in community and those looking to learn can find resources to better support the people they love and care for. One of those resources is the Courageous Parents Network (see below). Another is The Conversation Project, helping people have discussions about end-of-life care.
We express support for Tasha and the Faruqui family through this next phase of Soraya’s complex health journey.
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