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Parent to Parent

Life with Trisomy 21: Catalena’s Story

By Priscilla, Cat’s Mom When people tell you that you don’t know love until you’re a parent, it’s true. When Catalena first looked up at me with her little baby eyes, it was like time stopped. The world was still. […]

Life with Trisomy 18: Dawson’s Story

By Renae, Dawson’s Mom Dawson is an amazing little boy! He brings such joy to our lives. He has the most perfect little smile. Although he is non-verbal, he communicates with his eyes and hands to make us feel so […]

Life with Trisomy 21: Ally’s Story

By Margaret, Ally’s Mom As we approach World Down Syndrome Day on March 21st, we were asked to share a little about our daughter Alison (Ally). There is so much to write about, but I think our focus should be […]

The Beauty of Melia’s Feeding Tube

“There are different ways to feed your baby, and they are all beautiful,” Heather says. “I hope more people learn that during Feeding Tube Awareness Week.” When her daughter Melia Grace was born last summer, Heather wasn’t familiar with all […]

Iyanna’s Amazing Nurses

By Shadonna, Iyanna’s mom My daughter Iyanna was born in December 2017 with a heart condition call pulmonary atresia with intact ventricular septum. Just a few hours after she was born, Iyanna coded, and they had to shock her heart. […]

Jeremiah Takes His First Steps

By Kim, Jeremiah’s mom My son Jeremiah has grown not only physically but emotionally as well with physical therapy. When Jeremiah was born, we already knew he would have a harder time with simple things such as eating, talking, and […]

Finding the Perfect Therapy Team for My Son

By Maira, Erik’s mom Although my son, Erik, has always been a sweet boy, when he turned three his behavior began to change. I noticed a delay in his speech when he turned three years old, which was a bit […]

The Beauty of a Father’s Love

When Doug and Tina’s fourth son, Anthony, was born with muscular dystrophy, they faced new challenges as parents. “We didn’t know what to do,” Tina recalls. “We didn’t know what kind of life he could have. We had no idea […]

More Than a Nurse

By Rachel, Ella’s mom Ella has Nemaline Rod Myopathy and an immunoglobulin deficiency. Her skeletal muscles are profoundly weak, which makes endurance difficult and breathing on her own for long periods exhausting. Ella was trached in 2016 after getting RSV, […]

Shannon’s Story – A Mother’s Day Tribute to Mothers of Medically Fragile Children

By Shannon, Penny’s mom When I was pregnant, I daydreamed about what it would be like to hold my baby. I imagined taking her for a walk in the park, but all of that changed when Penny was born with […]