Help Baby Reina Fight a Rare Lymphatic Disorder

Hi everyone,

My name is Nan and I'm writing as a long-time friend of Hyung-in and Ken, and as a fellow parent who is heartbroken to witness their beautiful baby girl, Reina, endure such a devastating medical journey.

Ken and I met in graduate school while pursuing our PhDs in biomedical sciences. Over the years, our friendship has grown through life’s ups and downs – research, career changes, and now, parenthood. Watching someone I admire so deeply face such a profound challenge like this with strength and courage has moved me in ways I can hardly express. That’s why I’m reaching out for your help.

Reina was born on November 13th—a precious first child for Hyung-in and Ken. At first, she seemed like a healthy newborn. But within weeks, troubling symptoms emerged: breathing difficulties and a severely distended abdomen. Their concerns were initially dismissed at urgent care and other hospital visits as possible milk allergies, but her parents persisted, knowing something more serious was going on and continued to advocate for their daughter.

At her two-month checkup, imaging finally revealed red flags. Reina was immediately admitted to Kaiser Permanente Santa Clara and then transferred to the ER at UCSF Benioff Children’s Hospital when her condition worsened. She spent weeks in both the Pediatric Transitional Care Unit and the Pediatric Intensive Care Unit as doctors tried to understand what was happening. A diagnostic lymphangiogram on Valentine’s Day failed due to the extent of her lymphatic leakage.

With no clear diagnosis after two months, Reina was flown by medical air transport to the Children’s Hospital of Philadelphia (CHOP), home to one of the world’s leading lymphatic disorder programs. On April 2nd, a specialized MRI confirmed what doctors feared:

• Extensive malformations in her lymphatic system

• Thousands of microcysts in her mesentery

• Multiple serious leaks around her organs

Part of Reina’s diagnosis is Central Conducting Lymphatic Anomaly (CCLA), a rare and complex lymphatic anomaly characterized by abnormalities of the central lymphatics. Her treatment will be long, complex, and experimental. Doctors estimate that the family will need to remain in Philadelphia for at least 6 months just for first phase of care.

Despite all she had already endured, Reina’s journey is only beginning. She is currently awaiting a next-generation genetic profiling of her abnormal lymphatic tissues in hopes of understanding the root cause of her condition. In the meantime, she faces multiple upcoming surgeries to manage symptoms and reduce the lymphatic leakage.

This is not a short-term medical crisis. Reina is likely to live with life-long disabilities. Her parents are preparing for the long haul. Hyung-in is currently on medical leave but will possibly have to make the heartbreaking decision to leave her job so that she can provide full-time care for Reina. Ken, who was laid off last year and only recently started a new job in California, will continue working from afar as best as he can while making frequent visits.

As a parent, I can only imagine how overwhelming this is. As a scientist, I understand how rare and complicated Reina’s condition is. And as a friend, I see the emotional and physical toll this journey is taking on Hyung-in and Ken.

How You Can Help

• DONATE – Every dollar goes directly to support Reina and her family as they fight for her life.

Your donation will help cover:

Temporary housing, groceries, utilities, and transportation for Hyung-in and her mother

International flight for Hyung-in’s mom (from Korea), and bi-weekly trips for Ken between San Francisco and Philadelphia

 Out-of-Pocket Medical Expenses

Specialist visits, procedures, therapies, and treatment not fully covered by insurance.

• SHARE – Please spread Reina’s story. The more people who hear it, the more support we can offer her family.

• PRAY or SEND ENCOURAGEMENT – Hyung-in and her family draw deep strength from their faith and their community. Your kind words and prayers mean more than you know.

From the bottom of my heart, thank you for supporting this incredible family. Let’s come together to give Reina the chance to heal, grow, and return home with her loving family.

With heartfelt gratitude,

A Friend Who Cares Deeply