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[ Thank you for your support. New update has been posted below. If you have time, please read. - 2026/1/17]
Our nightmare began shortly after our daughter, Eloise, turned one year old. What started as a small issue with her eye in May 2025 quickly evolved into a confusing and terrifying medical mystery that turned our lives upside down.
The Long Road With No Answers
For months, we watched our little girl get sicker without understanding why.
We took her to appointment after appointment, only to hear explanations that never made sense. Her right eyelid drooped so severely that she underwent ptosis surgery. We clung to hope every time a doctor offered a new treatment or theory. But each time our hope would crumble as we saw her symptoms grow worse.
There is nothing more heartbreaking than following every piece of medical advice, doing everything right, and still watching your child slip away.
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Watching Our Little Girl Fade
By November, our bright, joyful toddler was changing before our eyes.
- She lost her balance and swayed even while sitting
- She could not smile because her facial muscles would no longer move
- Her tears fell without blinking
- She drooled because she no longer had the strength to swallow
These were not moments anyone prepares for. We held her, trying not to let her see our fear, while silently wondering how much more she would lose.
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Finally, a Diagnosis: Juvenile Myasthenia Gravis (JMG)
After months of desperation, endless testing, and sleepless nights, we finally had a name for what was hurting her. Eloise has generalized Juvenile Myasthenia Gravis, a rare and unpredictable autoimmune neuromuscular disease that attacks the connection between nerves and muscles.
Her antibody levels were more than 20 times higher than normal.
Her little body tires so easily. What looks like a normal morning can become a heartbreaking afternoon where she struggles to lift her head, open her eyes, or stand.
Knowing the diagnosis brought clarity, but it also brought fear. We finally knew what she was fighting, but we also learned how serious that fight would be.
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Our Current Emergency
Just days ago, everything escalated.
We received an urgent call from her specialist telling us to bring Eloise to the Children’s Hospital ER immediately. Within hours, she was admitted to the ICU. Her doctors believe she may be entering an MG crisis, a life-threatening complication we hoped we would never face.
She is expected to remain in the ICU for at least two weeks. It could be longer. We sit beside her hospital bed watching machines track the strength she is rapidly losing, praying she will keep fighting.
Both of us have already stepped away from work temporarily, and we know we will need to do even more in the coming weeks to stay by her side every moment. The emotional and financial strain has been incredibly heavy on our family.
No parent imagines standing in an ICU begging their child’s body to stay strong. But this is where we are.
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Why We Need Help
For months, we were in survival mode. We focused on keeping Eloise safe and finding answers. But now we can no longer ignore reality.
We are drowning in medical bills, and these costs come from:
- Multiple ER visits
- Hospital admissions
- Travel across cities to find specialists
- Endless tests, imaging, and procedures before the correct diagnosis
- The financial strain of unpaid leave to be by her side
- And now an extended ICU stay with unpredictable needs
We have poured everything we have, financially and emotionally, into helping Eloise. But the costs are now beyond what our family can carry.
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What Your Support Makes Possible
Your kindness directly supports Eloise’s care, including:
1. Immediate Treatment
- Medications such as Mestinon and steroids, to help her breathe, swallow, and open her eyes.
2. Advanced Care
- IVIG infusions that may stabilize her
- A likely major chest surgery called a thymectomy
3. Rehabilitation
- Physical and speech therapy so she can relearn basic functions like balancing, walking, and swallowing.
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A Message to Everyone Walking This Journey With Us
We never imagined sharing our story publicly.
As parents, we are doing everything in our power for Eloise, but the weight of these medical expenses and the long and uncertain road ahead is more than we can carry on our own. Every single contribution will go directly toward her medical care and the bills that have followed her long diagnostic journey.
More than anything, we want to see Eloise run without falling.
We want to see her open her eyes without struggle.
We want to see her beautiful smile return to her face.
Thank you for standing with us in this moment when we need it most. We are deeply grateful for every act of your support, whether it is a donation or simply sharing our story. Your kindness gives us strength on days when hope feels fragile, and it means more to our family than we can ever express.
With gratitude,
Hyeyoung Ku and Taewook Yang