Embracing Emily

Emily Frances Rohrer is 11 years old. On November 7, 2022, she was nonresponsive, had difficulty breathing, and was air cared to Children’s Hospital. With her mother and father at her side; brothers and sister at home; and countless others praying for her we all waited for answers. The doctors at Children’s Hospital told Emily’s parents, Danny and Susan, that Emily’s oxygen levels were extremely low and CO levels too high. Worse yet, Emily was no longer able to breath on her own. A tube was down her throat; a ventilating machine attached and breathing for her. We thought the ventilator was temporary and she’d be home soon. But it wasn’t temporary, and our little Emily is still at Children’s Hospital. Her diagnosis: Kearns-Sayre Syndrome and Leigh Syndrome. Kearns-Sayre Syndrome (KSS) is a rare Mitochondrial Deletion Syndrome that affects 1-2 in 100,000 individuals. In 90% of cases, a person with KSS is the first to have the Syndrome – meaning, it’s not typically inherited. The key factors of KSS are progressive and include cardiac defects, deafness, kidney problems, cognitive function decline and more. Leigh Syndrome is a name for some neurologic signs seen in Mitochondrial Disorders. Since being diagnosed late November Emily has had a tracheostomy and pacemaker installed. After these surgeries the ventilator has been re-attached; she’s had pneumonia; a sepsis infection; and now, pancreatitis. Her road to recovery is expected to be difficult and slow. She’ll spend several more months at Children’s Hospital before her family can welcome her home. Which brings us to this day. The day her GoFundMe account, Embracing Emily, was created. Embracing Emily is about sharing this chapter in her life’s story with you. This chapter has been especially painful for her family so please Embrace Emily by sending your prayers, positive energy, love and yes, financial support. Danny and Susan are employed but their full-time attention and presence has been with Emily and their other three children (ages 15, 13 and 9) at home. While on leave from work Danny and Susan have been unpaid since last November. Your financial support will go toward medical bills, food, gasoline, and everything else necessary to care for a young family of six. Please Embrace Emily with your prayers and donation today.

Beautifully written by: Cynthia Billups Christian