The Schissler Family

Scroll down to see updates as the Schissler family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Initial Backstory

"God has blessed me with three beautiful daughters. My oldest, Korra Faye, is two years old — the smartest little girl I’ve ever met and also the sweetest. My middle child, Nanami Kimorra, is one year old and already has the personality of a superstar. Her energy and spirit are what keep me going every single day.

Then there’s my third baby girl, Nico Robin — our fighter. When my partner and I first learned about her diagnosis, we were heartbroken. We had two healthy daughters, and we couldn’t help but ask ourselves, “How could this happen?” The hospital we first went to gave us little to no hope for her survival. But my partner and I refused to give up. Through faith and determination, we were connected to an incredible team of doctors at CHOP (Children’s Hospital of Philadelphia), who restored our hope and gave us something to hold onto — the possibility of survival.

As we worked closely with our CHOP team and our social worker, everything began to move quickly. There was no time to plan or save for our relocation, but we knew nothing would stand in the way of giving Nico Robin the best chance at life. On August 29, 2025, our precious girl was born. Since then, it’s been a rollercoaster of emotions. Even as a newborn, she shows so much personality and strength — I can already tell she’s a fighter, just like the rest of her family. There have been terrifying moments when we feared losing her, but she pulled through and was successfully taken off ECMO. Though the journey has been full of ups and downs, as of November 5, 2025, she continues to fight bravely every day.

My oldest, Korra Faye, understands that her baby sister is sick. She often tells me she wants to “bring her home” and “hold her.” It breaks my heart to explain that Nico will have a “boo boo” for a while, but hearing Korra say, “I love her,” melts me every time. I hold on to the vision of the day when all three of my beautiful daughters will be together — laughing, playing, and running around. Until then, I’m holding onto faith, hope, and love.

This grant would mean so much to my family. Right now, I’m not working, and these funds would help me provide the basic things my daughters need every day. It would help me keep up with diapers and wipes, and make sure they have warm clothes as the weather gets colder. It would also allow me to keep my phone service active so I can stay in touch with the hospital and Nico’s doctors. This support would help me keep water and juice in their sippy cups, and make sure we have essentials like body wash and toothpaste when we run out. Receiving this grant would truly ease some of the stress and help me care for my girls the way they deserve."

Update 11/30/2025

"As of right now, we are going through a rough patch. Nico has been having a lot of ups and downs. Her doctors have put her back on a medication she was taken off from. They did not realize she was reliant on that certain medication. She is back on and we’re all waiting for her to respond to it. The doctors were able to wean some of her oxygen levels, which is good."

Update 1/4/2026

"My little fighter keeps fighting every single day. Nico’s team is doing everything in their power to keep her off of paralysis. My family and I are getting to see her awake a lot more. She moves her little fingers and toes. She’s super alert when she hears her daddy’s voice! Her oxygen levels are way better than they were a couple of weeks ago. She has been having better days!"