Fund Rhett's Life-Saving Surgery & Freya's Essential Care

Help the Nielson Family Navigate Rhett and Freya’s Medical Journey

This past year has been a whirlwind of hospital stays, life-changing procedures, and unimaginable challenges for the Nielson family. With over 160 days spent away from home at children’s hospitals, birthdays and holidays celebrated in hospital and Ronald McDonald House rooms, and a mountain of medical expenses, they now face their most daunting challenge yet.

Rhett, just 21 months old, has been diagnosed with an extremely rare and life-threatening type of Congenital Diaphragmatic Hernia (CDH). This literal one-in-millions defect, missed for much of his young life, has caused his bowels and colon to move into his chest, compressing his heart and lungs. A loop of his intestine sits above his heart, his esophagus is being compressed, and his entire GI system is impacted.

In March, the Nielsons must temporarily relocate to Johns Hopkins All Children’s Hospital (JHAC) in St. Petersburg, FL, home to the only dedicated CDH program in the world. Over the next 2-3 months, Rhett will undergo a complex, life-saving diaphragm reconstruction surgery. Additionally, during this surgery, a G-tube will be placed to ensure Rhett can receive all nutrition directly through his abdomen, creating a connection to his stomach to support his health and recovery.

Freya, Rhett’s twin, has also faced significant medical challenges over her short life. Her necessary procedures, like the in-hospital Impedance Procedure, have been denied by their new insurance and must now be paid for out of pocket.

Why They Need Your Help

Mike has been unable to work for over a year due to the intense care both babies require, and the family has already paid over $70,000 in out-of-pocket medical expenses in 2024 alone. The costs of relocating to Florida for Rhett’s surgery, ongoing follow-ups, and cash payments for denied procedures are astronomical.

The Nielsons will spend 2-3 months in Florida, followed by an additional month at Nationwide Children’s in Columbus and Cincinnati Children’s. They also face at least four more week-long out-of-state hospital stays this year for follow-ups.

How Your Donation Will Help

Your support will directly contribute to:

Every Contribution Counts

The Nielson family has faced unimaginable hardship with grace and resilience, but they can’t do this alone. Your generosity can help ensure Rhett and Freya get the care they desperately need while easing the immense financial strain on their family.

If you’re unable to donate, please consider sharing their story to help spread the word. Together, we can make a difference for the Nielson family and give Rhett and Freya the best chance at a healthier future.

With gratitude,

Michelle & Mike's friend, Rachel