Hope for Theodosia: Living with CHARGE Syndrome

“Help Sian and Abe give their daughter, Theodosia the care, tools and love she needs to overcome life’s first big challenges.”

Our sweet baby Theodosia (“Theo”) has already faced more in five months than most do in a lifetime. Born with CHARGE Syndrome—a rare genetic condition affecting her heart, hearing, vision, kidneys, and ability to swallow—she’s spent her early days fighting to survive and grow. We never imagined our journey would include surgeries, feeding tubes, and endless hospital visits, but here we are… doing everything we can to give Theo the best chance at a healthy, happy life.

Your support will help cover her critical medical needs, from hearing aids to upcoming surgeries, so we can focus on caring for her instead of worrying about how to pay for it. Every gift, no matter the size, makes a difference in Theo’s fight.

Our Journey with Theodosia: An Unexpected Diagnosis

The past five months have been a whirlwind of emotions we never could have prepared for.

When our daughter Theodosia (“Theo”) was born, doctors noticed her heart rate dropped dangerously low—twice. We were told that if she didn’t arrive soon, an emergency C-section would be necessary.

Theo came into the world purple and silent. She had to be intubated immediately and rushed to the NICU team for oxygen. I didn’t get to hold her until an hour later. She was beautiful… but I couldn’t help noticing a few things that worried me: a scar across her upper lip, misshapen ears, and a squeaky sound when she breathed.

Doctors reassured us that newborn hearing tests often require retesting—but she failed again. When I asked about her breathing, ears, and lip, the only response was: “Time will tell.”

At one month old, Theo still struggled to eat and gain weight. A feeding specialist admitted her to the hospital for “failure to thrive.” Genetic testing followed. Six weeks later, we received the news that changed everything: Theo has CHARGE Syndrome, a rare genetic condition that affects many parts of the body.

So far, her diagnosis includes:

    •    Colobomas in both eyes, causing partial vision loss

    •    Profound hearing loss in her right ear and complete deafness in her left

    •    A cleft lip that healed in utero

    •    Two heart defects under close monitoring

    •    Cysts/lesions on her kidney and spleen

    •    Growth restriction and nerve damage affecting her mobility

    •    Inability to swallow safely—currently fed through an NG tube, awaiting surgery for a G tube

This was never part of our plan. My pregnancy was normal, with clear genetic testing at 12 weeks. We had prepared for six months of maternity leave and saved what we could. But now, our time, savings, and resources are gone. My leave ends August 20th, and we are already facing significant out-of-pocket costs, including her hearing aid fitting tomorrow—something insurance will not fully cover.

We’ve been denied financial aid because her father’s income is just slightly over the qualifying limit. We’re deeply grateful for WIC and kind neighbors who’ve helped with food, but the reality is—we need help.

I’ve been asked many times, “How do you do it?”

The truth is: we do it with help from others.

And now, we are humbly asking for yours.

Your gift—no matter the amount—will help us focus on giving Theo the care she needs without the constant fear of how we’ll pay for it.

From the bottom of our hearts, thank you for reading, sharing, and being part of our story.