Nothing can prepare you for the moment you’re told that your newborn has a rare and serious medical condition.
In April 2025, our sweet baby boy, Rocco, entered the world—and with him came a diagnosis that forever changed our lives. Rocco was born with Giant Congenital Melanocytic Nevus (GCMN) and Neurocutaneous Melanocytosis (NCM)—rare, complex conditions that will require extensive, lifelong medical care and bring seasons of uncertainty. GCMN affects only 1 in 500,000 people, and because of its rarity, we quickly discovered that many physicians have limited experience treating it. Children with GCMN also carry an increased risk of developing melanoma, a life-threatening form of skin cancer. That reality has added another layer of fear, uncertainty, and determination to our journey as his parents.
After countless hours of research, second opinions, and difficult conversations, we found hope in a highly experienced plastic surgeon in Chicago who specializes in cases like Rocco’s. While we are incredibly grateful to have access to such expert care, it does require us to travel out of state multiple times.
Beginning in March, Rocco will start a series of tissue expansion surgeries to remove the giant nevus from his scalp. This will involve three rounds of tissue expansion, totaling six surgeries over approximately two years. These procedures are necessary and critical to his overall well-being, comfort, health, and future.
For the first surgery, we anticipate staying in Chicago for about two weeks, making it the longest and most demanding trip. During this time, doctors will teach us how to remove Rocco’s drains and perform the tissue expander fills ourselves. Once we are trained, future trips will hopefully be shorter.
Many friends and family members have asked how they can help, and while your prayers and emotional support mean the world to us, the greatest need right now is help with the overwhelming costs that come with caring for our baby during the surgeries while being far from home.
Funds raised will help cover:
- Airfare for our travel to and from Chicago, and potentially for flights for Mike and our 3-year-old son Mikey to visit in order for our family to be together during extended stays
- Safe, comfortable lodging that allows us to properly care for Rocco during his healing while we are away from home
- Meals for myself, Rocco, and family during stays
- Rental vehicles and gas to travel to and from the hospital and airport
- Medications and medical equipment Rocco may need throughout his treatment
- Missed income from time taken off work so I can be by Rocco’s side, fully present, and care for him during recovery
This journey is one we never expected, but Rocco is already showing us what true strength looks like. Every surgery, every scar, and every step forward is a testament to his resilience and fight. Any donation—big or small—helps lift some of the weight off our shoulders and allows us to focus fully on Rocco and his healing.
If you’re unable to donate, sharing this page, following Rocco’s journey, and keeping him in your prayers is just as appreciated. You can follow for updates and honest reflections on Rocco’s blog: Rare Rocco.
We continue to lean on our faith, trusting that God goes before us and holds Rocco in His hands. Through the fear and unknown, we are reminded that God chose us to be Rocco’s parents for a reason. We believe He will guide the doctors, strengthen our family, and carry us through every step of this journey. With faith as our foundation, we move forward with hope, courage, and unwavering trust in God’s plan.
Thank you for standing with us and loving our boy. Every bit of love and support helps carry us through this journey.
With love and gratitude,
The Kalich Family
Organizer
