From Julia’s Parents (Kong & Jessica)

Hi, we’re Kong and Jessica, Julia’s parents. We’ve never been the type to ask for help, but after everything we’ve been through—and what we’re still facing—we need support to keep our daughter alive. Our family is in survival mode, providing intensive, life-sustaining care alone while battling insurance delays, unreliable nursing, and mounting uncovered bills that threaten to overwhelm us.

Summary

Julia's life is in constant danger. After surviving a long, traumatic NICU journey, she came home completely dependent on a tracheostomy, 24-hour mechanical ventilation, and G-tube feeds. A single missed alarm, delayed response, or equipment issue can be fatal. Just yesterday, her trach accidentally came out during routine care with a nurse. Her oxygen crashed to 50%, she turned gray, and we scrambled to bring her back. These near-death moments happen too often, leaving us exhausted and grieving. Recent hospital stays are just another reminder of how fragile she remains. Most recently, she spent 13 days in a Pediatric Intensive Care Unit (PICU) for a "simple" cold that escalated into tracheitis and aspiration. Upon admission, she spent 2 entire days unconscious. Even common viruses put her at enormous risk. Despite being approved for private duty nursing, we are struggling to get reliable and consistent nursing support, and Medicaid delays mean we're facing thousands in uncovered bills beyond the 90-day retroactive window. We're running on fumes—physically, emotionally, and financially—while trying to give our 2-year-old daughter Jade a sense of normalcy. This fundraiser is our lifeline to cover critical gaps and prevent burnout or financial collapse from endangering Julia further.

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Julia’s Story

Julia is our second beautiful baby girl. After a healthy pregnancy, everything shattered at 33 weeks when she stopped moving and Jessica was rushed into an emergency C-section. On the operating table, we learned Julia wasn’t breathing and was in distress—we didn’t know if she’d survive.

Born not breathing, she was intubated immediately. What followed was 151 traumatic days in the NICU: daily fears of brain damage, repeated grim prognoses, and the agony of splitting time between her, Jade, and work while living in terror.

Doctors later clarified that no seizures or major brain damage had occurred, but the months of uncertainty left deep emotional scars.

Slowly, Julia grew stronger—small movements, eyes opening, tiny victories. She came home medically complex, undiagnosed, and fully dependent on life-sustaining technology.

We still have no clear explanation for what happened, and her road ahead is long and uncertain.

Life at Home Now — The Daily Reality

Julia requires constant, skilled monitoring: 24/7 ventilation, trach care, suctioning, and G-tube feeds. Tasks often require two people for safety. Leaving the house is a major operation—someone must sit in the back of the vehicle at all times constantly watching her airway, vent, and oxygen levels.

Even mild illnesses escalate quickly. In January, a cold from Jade led to rapid breathing difficulty, fever, and a PICU admission for Julia—requiring constant suctioning and respiratory support.

She spent the first two days unconscious, and soon after waking, developed tracheitis and severe aspiration issues. This kept her in the hospital for 13 days with new meds for reflux and an inflated trach cuff.

She's home now and on the mend, but these setbacks are reminders of how precarious things are. Although Julia has been approved for private duty nursing hours, we've had a difficult time securing reliable and consistent nursing support.

Most days, we still provide all of her care ourselves, taking shifts throughout the day and night. The adrenaline crashes, grief after each close call, and exhaustion are overwhelming. Behind every "we're hanging in there" and "she's stable" is a family that is barely holding on at times.

Bright Moments Amid the Storm

Julia shows incredible resilience and progress: holding toys, rolling over (which now requires extra vigilance to protect her equipment), increased eye contact, and curiosity despite cortical visual impairment and legal blindness. These joys keep us going—but they come alongside heightened monitoring needs.

The Financial & Systemic Crisis

We're fighting insurance for prescriptions, supply companies for equipment, and the system for nursing support. Medicaid approval was painfully delayed, by more than 4 months after Julia's discharge from the NICU. Their 90-day retroactive coverage window has left us responsible for significant uncovered bills from hospital stays, specialist visits, supplies, medications, and transport.

Why We Set This Goal

We set a goal of $40,000 to cover immediate uncovered medical bills, life-sustaining equipment, and continued life-sustaining care. Any funds raised go directly toward keeping Julia safe and allowing us to focus on being her parents instead of drowning in debt and fear. If you can donate—even a small amount—it helps sustain her life. If you can't, sharing this reaches someone who might. Thank you for reading our story, for your thoughts and prayers, and for standing with us during the hardest chapter of our lives.

With endless gratitude,

Kong, Jessica, Jade & Julia