By Carole Dobbins
Mommy to Danielle Rey
Mowat-Wilson Syndrome
Born December 2021
I had a normal pregnancy and was told Danielle Rey was healthy in utero. There were no concerns on ultrasounds, and nothing prepared us for what would come after her birth.
Within a day of being born in December 2021, Danielle was rushed to the NICU because her feet had turned blue. She stayed there for 81 days. During that time, doctors discovered congenital heart issues, feeding difficulties, and failure to thrive. She was also diagnosed with Hirschsprung’s disease. Her first surgery failed, which led to the placement of a colostomy.
In March of 2022, we received devastating news—Danielle Rey was diagnosed with a rare condition called Mowat-Wilson syndrome. Because the disease is so rare, affecting only about 500–600 people worldwide, there wasn’t much information available. At that point, all we had were discouraging Google searches and very limited information from doctors.
After her diagnosis, my hopes shifted. I just wanted Danielle to live a normal and happy life.
Danielle’s condition impacts every part of her life. I’ve had to accept that I will never have a “normal” life with her and instead adjust to a new normal. She has chronic G-tube dysfunction and an oral aversion and now receives all of her nutrition intravenously through a central line. She likely has a reduced life expectancy, and I know I’ll miss milestones most parents expect, like her going to college or getting married. My goal is simply to help her live as healthy a life as possible.
We have spent more than a year of Danielle’s life in hospitals, and we try to truly enjoy the times when she is healthy. Beyond her initial NICU stay, she has had many hospitalizations. She was hospitalized from October 2023 through March 2024 for wound care following a colostomy reversal. Later, she was hospitalized again from October 2024 through April 2025 for feeding issues and agitation. These stays represent only a portion of her hospitalizations and emergency room visits. During those long stays, I stayed with her and rarely left her side. My dad visited as often as he possibly could.
Danielle participates in physical therapy, occupational therapy, and speech therapy as we work toward standing, walking, and communicating. She is currently non-verbal and non-ambulatory. The constant appointments are exhausting, and the therapy schedule alone can be overwhelming.
We connected with On Angels’ Wings in March of 2024 through Ranken Jordan Pediatric Bridge Hospital. That experience meant so much to us. For one day, Danielle wasn’t just a patient—we got to celebrate her. We had so much fun during our family photo session, and it brought joy during an incredibly challenging time.
Danielle Rey is the sweetest, bravest, and most resilient child. She loves light-up toys and music, especially Taylor Swift. One of the most precious things she does is hold her hands clasped together in prayer.
Looking ahead, I want Danielle to live as independently and as healthily as possible. I can’t imagine losing her, but I also worry about her outliving me, because I am her greatest advocate.
The photos we received through On Angels’ Wings meant the world to us. In the midst of everything we’re facing, those images allow us to pause and celebrate Danielle as our child—not just focus on her medical needs.
If I were talking to another family, I would tell them to capture the moment now. Have the photos taken. These memories matter more than you can ever imagine.
