A Mother's Journey: Undiagnosed Illness, Hospice Care, and Finding Joy in Grief

The Beginning of Sariah's Journey

• 💡 Soraya's symptoms began shortly after birth, including feeding difficulties, sweating with feeds, and aspiration, which doctors initially dismissed as overanalysis.
• ⚠️ At four months old, Soraya was diagnosed with Failure to Thrive due to significant weight loss, prompting further investigation.
• 🔬 A swallow study revealed aspiration, where liquids went into her lungs, and a G-tube was inserted at six months for nutrition.

Years of Undiagnosed Illness

• 🔍 Over three years, nine specialists conducted extensive testing, including blood work, exome testing, and spinal taps, but all results were inconclusive.
• 🧩 Despite the lack of a diagnosis, Soraya continued to develop skills, talk, and learn, leading the family to adapt their expectations for her future.
• 📉 Around age 9, Soraya's condition worsened, impacting her vision, hearing, feeding, and causing recurrent infections, pneumonia, poor growth, and fatigue, indicating muscle weakness.

Transition to Hospice Care

• 🏥 Soraya began requiring a BiPAP ventilator to assist with breathing and eventually needed a wheelchair due to extreme fatigue.
• 🎗️ Hospice care was initiated not based on a strict prognosis, but because there is no cure and her condition is progressively declining.
• 💬 Soraya, now 13, has mild intellectual disability but possesses insight, can hold conversations, and expresses her struggles, like the difficulty of simple tasks.

Finding Joy and Purpose

• ✨ The family maintains a positive outlook by decorating a year-round Christmas tree and engaging in activities like online shopping and listening to music.
• 💖 Soraya is aware of her story being shared publicly, advocating for others not to bully people who are different and to see disabilities as superpowers.
• ✍️ Tasha Faruqui wrote the book "Keep Your Head Up" to address anticipatory grief, finding purpose in pain, and helping others navigate similar situations.
• 🤝 Sharing their story has fostered a sense of community, helping the family and others feel less alone in their struggles with chronic and undiagnosed illnesses.