By Dr. Tasha Faruqui
Our daughter, Soraya, has been receiving support through HCDDS for the past ten years. One of the most difficult aspects of her medical journey has been the absence of a clear diagnosis. As physicians, my husband Safi and I felt a strong sense of responsibility to pursue every possible explanation. Soraya saw countless specialists and endured extensive testing—blood work, genetic analysis, spinal taps, and muscle biopsy. Despite all of this, we were left without a unifying answer.
This uncertainty made it clear that we needed to be somewhere with outstanding medical support. That’s what brought us to Cincinnati, where we could access the incredible care of Cincinnati Children’s Hospital Medical Center (CCHMC). Even without a diagnosis, we knew she’d be in the best hands. Through CCHMC, we’ve participated in national research studies, continuing our hope to uncover the cause behind her illness.
While we’ve grown to accept that we may never have a definitive diagnosis, nothing could have prepared us for what came next. After years of making progress and catching up on milestones, Soraya began to decline. About three years ago, she started experiencing more fatigue, difficulty walking, and—for the first time—trouble breathing due to weakening chest wall muscles. It marked a turning point we weren’t ready for.
Explaining this to her sisters, Yasmeen and Leena, was incredibly difficult. Even as a pediatrician, I struggled to navigate this space—how to grieve what we were losing while still holding on to the need for hope and stability. I reached out to pediatric palliative care for guidance, and their support has been invaluable as we’ve adjusted to the realities of Soraya’s increasing needs.
During this time, I found myself searching for resources—not just for end-of-life grief, but for what comes before. I was living with anticipatory grief: mourning the loss of her abilities and the future we imagined, all while continuing to care for her, our other daughters, and ourselves. I was shocked at how little there was to support families living before a loss.
That need for connection led me to start sharing our story on Instagram (@TheFaruqui5) and write a book. What began as a personal outlet has evolved into a deeply meaningful online community. The response has been overwhelmingly positive, and it’s helped all of us—especially Yasmeen and Leena—realize the power of storytelling. They’ve seen firsthand that there is strength in sharing, that their voices matter too, and that even the siblings of medically complex children have stories that deserve to be heard.
This community has made us feel far less isolated. We’ve connected with others navigating chronic illness, rare disease, grief, and mental health challenges. There is such beauty in lifting each other up. The messages we receive, the people who follow our journey with care and compassion—it reminds us that we are not alone. I am hoping my book, Keep Your Head Up: A Mother’s Story of Chasing Joy in the Face of Grief (Wiley, September 2025) will do the same for others.
Most importantly, this work shows our daughters that sharing our truth can be a form of advocacy—not just for Soraya, but for themselves and for others who might not have the words. I feel that this community, and that book, are a part of Soraya’s legacy—a way for her life to keep touching others, even after she’s gone.
Above: The Faruqui 5—Safi, Yasmeen, Soraya, Leena and Tasha. Below: Soraya has an undiagnosed medical condition and her health continues to decline. The family took a trip to Hawaii as part of the Make-A-Wish foundation.
Dr. Tasha Faruqui is a pediatrician, author, speaker, and advocate. She has been on the HCDDS Board since 2018. Tasha wrote Keep Your Head Up: A Mother’s Story of Chasing Joy in the Face of Grief about her family’s journey dealing with anticipatory grief. Her book will be published this fall, and you can pre-order it from Amazon, Barnes and Noble, Bookshop.org, or Books-A-Million.
