By Vicky Combs
Mommy to Josephine (Josie)
Marshall Smith Syndrome
Born May 2019
became a recipient in 2024
We got Josie when she was 9 months old, placed with us through medical foster care. We knew she had Marshall-Smith Syndrome, but we had no idea the journey the Lord was about to take us on.
Marshall-Smith Syndrome is a rare genetic condition that causes advanced bone aging, which can lead to breathing problems, difficulty gaining weight, neurological issues (like seizures), distinctive facial features, and developmental delays. It’s caused by a spontaneous change in a specific gene, and most people have never even heard of it (only 20-30 people in the U.S. have this condition). But we were about to live it.
When they dropped off that tiny 9-pound baby at our house, we simply hoped we could love on her for as long as the Lord allowed her to stay with us.
When Josie was a year old, we discovered she also had a heart defect and would need emergent heart surgery. The next year, she required a shunt for hydrocephalus. We officially adopted her in 2021. Not long after, she needed a trach due to vocal cord paralysis.
Everything changed when she contracted a respiratory virus and spent 32 days on life support. It was a miracle that she survived—and we celebrate every day we get with her.
Josie is the rainbow of our family. She can brighten up even the rainiest days. It’s hard, having a child with so many specialists and appointments, surgeries, hospitalizations, etc. Her older brother and sister have had to give up so much. But seeing her thrive and grow makes every bit of it worth it.
Josie is doing amazing now. She started school and is learning how to sign. Every day we get with Josie is a gift. We just hope to keep loving on her for as long as possible.
We were introduced to On Angels’ Wings around Josie’s 5th birthday, not long after the organization started serving the Oklahoma City area. Most kids with her syndrome don’t live past childhood, so having these beautiful birthday photos from OAW reminds us to celebrate each year we are gifted with her.
Having a photographer willing to work with Josie’s special needs means so much to us. Josie can’t tolerate being outdoors very well, so for our first session the photographer found a beautiful studio we could use instead. Our second session was outdoors, and the photographer worked with us when the weather was too warm for her to reschedule and make outdoor photos possible. The photos from On Angels’ Wings are special memories we will hold onto forever.
We’ve recommended OAW to many of our friends in the special needs community. It’s hard to find photographers willing to work with medically complex kids. And on top of that, finding the extra money to pay for photos can be nearly impossible. OAW goes above and beyond—not only providing professional photos at no cost, but making sure they’re incredibly meaningful.