When Soraya Faruqui was a newborn, she struggled to take a bottle and lost a significant amount of weight. After her doctors recommended solid food, they discovered Soraya had stridor. This prompted a swallow study that showed Soraya was aspirating with every swallow.
With no clear diagnosis, the early years of Soraya’s life were spent on a medical odyssey with a variety of genetic tests, biopsies and appointments.
Soraya’s medical complexities are defined as a “constellation of symptoms,” including global developmental delay, G-tube dependency, progressive muscle weakness, and ventilator dependency at night.
Now 9 years old, she does not have a definitive diagnosis to unify her symptoms. Soraya’s health has declined over the last two years, leading her and her family to prioritize advocacy and education.
Telling their story
As a former military family, the Faruquis’ insurance didn’t cover the specific muscle biopsy needed for a potential diagnosis. Through testimonies, letters and help from members of Congress, Tasha, Soraya’s mother, was able to get the biopsy covered by Tricare.
“Advocacy directly helps Soraya and her quality of life, but it also helps every kid and their family,” says Tasha. She is also on the board of the Hamilton County Department of Disability Services and works in the Cincinnati community as a pediatrician and educator. “I may be serving the people of Hamilton County, but I have learned so much about the community and the services they offer.”
Soraya and her mother advocated for children’s health when they participated in the 2020 Speak Now for Kids Family Advocacy Week. The event allowed them to meet with their representatives in Congress and share their family’s story, educating lawmakers about the role of children’s hospitals and the care they provide.
“I want Soraya’s life to matter,” says Tasha. “Her health is declining, and I want to get my hands on as many advocacy-related things as possible. I want her to have lived this life and live this journey to impact others.”
Teaching future providers
Occasionally, Soraya gets an extra visitor or two at her doctor’s appointments and therapies. Tasha, a community preceptor for doctors in residency, brings the residents with her to Soraya’s appointments at Cincinnati Children’s Hospital Medical Center. She shares with medical students and residents what it’s like to be the parent of a child with complex medical conditions. “I didn’t know what families actually went through,” says Tasha. “But having that experience with Soraya affects the way I deliver care.”
The residents prescribe therapy or make a referral, and Tasha wants them to understand what that means for families. “If the families have to find a babysitter for their other kids or take time off of work, I want them to understand what it’s like to walk in the family’s shoes,” says Tasha.
When Soraya was first diagnosed, Tasha’s role as an advocate shifted. With an understanding of the patient journey, she’s able to better care for her patients and her child. “It gives Soraya’s life, and the struggles that we go through, a purpose,” says Tasha. “Advocacy and education help everybody.”