Small But Mighty: Jenna's Journey Through ECMO, Stroke, and Down Syndrome
Lately, it feels like the Down syndrome community has been at the center of a lot of conversations. People are sharing opinions, debating diagnoses, and speaking up in support of individuals with Down syndrome and their families. But behind every conversation is a real person, and that's why we tell these stories, because Down syndrome isn't a statistic or a headline.
This is Jenna.
A little girl who loves music, cuddles, her mama, and making sure her little brother CJ knows who's boss. A little girl with the prettiest eyes and a collection of bows she wears better than most of us ever could.
Before we tell you about Jenna's journey, could you meet her first? Not her diagnosis. Not her medical history. Just her.
Jenna is the younger sister of an older brother and sister, and the proud big sister to her little brother, CJ. She's a mama's girl through and through and loves being close to the people she loves most. She absolutely lights up around her family, and it's easy to see just how loved she is.
One of our favorite parts of Jenna's session was watching the bond she shares with her mom. She wasn't afraid to need her. She looked for her often, stayed close by, and found comfort in her throughout our time together. There was something really beautiful about watching that trust and connection. In a world that constantly pushes independence, it felt like a reminder that there is also beauty in being someone's safe place.
And while Jenna is incredibly sweet, she definitely has a little sass in her too (lol), especially when it comes to CJ. Watching their sibling dynamic unfold during the session kept us smiling. It was one of those moments that felt familiar to any parent with more than one child. Equal parts love, mischief, and making sure your little brother stays in line and doesn’t get too close to mom.
During our session, Jenna was gentle, loving, and full of quiet joy. She has the kindest eyes and the sweetest spirit. She loves music, nursery rhymes, snuggles, and spending time with her family. She's the kind of child who reminds you to slow down and appreciate the little things.
And yet, Jenna's story also begins with incredible strength.
Shortly after she was born, Jenna developed pulmonary hypertension, a condition that causes high blood pressure in the blood vessels between the heart and lungs, making it difficult for her body to get oxygen. While she was so sick, doctors placed her on ECMO (Extracorporeal Membrane Oxygenation), a life-support machine that temporarily does the work while the body heals.
While on ECMO, the machine malfunctioned, and Jenna suffered a stroke. Because of this, her left side doesn't work quite as well as her right, and she's still working hard on using her left hand. As a baby, she also experienced infantile spasms, a rare type of seizure disorder, but thankfully, treatment was successful, and the spasms completely went away.
All of that is to say… Jenna is one tough little girl.
Her journey hasn't been easy, but she continues to show just how resilient she is every single day. More importantly, she continues to be exactly who she's always been, a little girl who loves hard, finds joy in the simple things, and is surrounded by a family that absolutely adores her.
