2015

Where it began.

Sophia arrived on April 18 as a healthy baby girl, 6 pounds and 13 ounces, loved by her parents and showered with affection by a big sister who could not wait to meet her.

For a little while, everything felt like the beginning of the life every family hopes for. Family, friends, and neighbors came by after Sophia came home, and her parents tried to settle into the ordinary joy and exhaustion of a new baby.

Then, at about five weeks old, Sophia was rushed to Dell Children's Hospital with Parainfluenza Virus 3, a dangerous infection for an infant. Her family watched her fight for life before she was finally discharged.

Relief did not last long. Mild torticollis appeared. Her left eye began drifting. By 16 months, milestones were not arriving the way they should. Sophia struggled to pull herself up, needed help to walk, and showed fine motor concerns.

Her parents first tried the things parents try when they still believe the answer may be simple: physical therapy to strengthen her legs, occupational therapy to understand her hand use, more appointments, more questions, more hope that the next evaluation would explain what was happening.

An occupational therapy evaluation revealed swallowing trouble and silent aspiration. Food and liquid were going where they should not, and her family faced the painful decision to place an NG tube so Sophia could receive the nutrition she needed to survive and grow.

Even before the full diagnosis, the financial strain began. Dad had opened a separate savings account after Sophia was born to set aside money for medical needs, not knowing yet how badly the family would need it. What began as caution slowly became a lifeline.