The story of Alicia hampton
Our journey began when we discovered that Madalynn had a genetic disorder at just under 2 years old, after a terrifying ICU stay due to respiratory distress. We were completely unsure why this was happening or what caused it. Her last foot surgery, when she was only 18 months old, had put her in the hospital because the tubes used during the procedure irritated her airways, causing them to close up and make it impossible for her to breathe. We were overwhelmed with fear and confused about why this was happening to her. Her first two years of life were incredibly challenging. She endured numerous surgeries, countless hospital visits and stays, multiple therapies, and medical equipment, including casting.
After that scary hospital visit, I reached out to her Genetics doctor with my concerns, feeling like something more was wrong. That’s when he recommended full genetic testing, which led to the discovery that her ADHC1 gene was mutated, and she had a rare genetic disorder called Xia-Gibbs syndrome. At that moment, we were left with so many questions and uncertainty about what this would mean for our future.
Despite everything, Madalynn has shown immense strength. Now, at almost 6 years old, she is thriving. She just started walking a year ago, and now she’s running! Although she is still nonverbal, she is trying to communicate every day and knows sign language. Her school is absolutely incredible, providing her with excellent support for both speech and occupational therapy. We are so grateful to have found our Xia-Gibbs community, where it’s comforting to connect with others who truly understand what we’ve been through.