09/01/2026
Many of you know me as one of the Dr. Me*gans, Dr. Odgers, or simply your veterinarian at Larchmont Animal Hospital. But outside of the hospital, I am also a mom to an incredible little girl named Cora, who has Xia-Gibbs Syndrome (XGS). This week is especially meaningful to our family because it is Xia-Gibbs Syndrome Awareness Week.
Xia-Gibbs Syndrome is an ultra-rare genetic disorder caused by a change in the AHDC1 gene. There are only approximately 650 diagnosed individuals worldwide (Cora was only number 78 in the world when she was diagnosed at 8 months old!), although we know there are likely many more who remain undiagnosed.
XGS can affect individuals very differently, but common challenges can include global developmental delay, intellectual disability, low muscle tone, speech delay, sleep apnea, seizures, scoliosis, and features of autism spectrum disorder. Every child and adult with XGS has their own unique combination of strengths and challenges—which is why this year's theme means so much: One Gene. Many Journeys.
Cora's journey is uniquely hers. And while having a child with a rare genetic disorder can sometimes feel isolating, our XGS community has connected families from around the world who understand that journey in a way few others can.
One of the biggest challenges with an ultra-rare disease is research funding. There simply isn't the same level of government, pharmaceutical, or private funding available for conditions affecting thousands or millions of people. Much of the research and support for XGS depends on families and our community raising the funds ourselves. And research is the future for our kids.
We need to better understand XGS, identify effective treatments and therapies, understand what the future may hold for our children, and ultimately work toward better outcomes for every person living with this condition.
The Xia-Gibbs Society has already helped partially fund important research through the Human Genome Sequencing Center at Baylor College of Medicine, including work toward developing a patient registry. But there is so much more to learn—and so much more work to do. This year, the XGS community is working toward a goal of raising $7,500 by September 7th to support research and family conferences.
If you would consider helping, simply sharing this post and helping us spread awareness is incredibly valuable. The more people who know about Xia-Gibbs Syndrome, the more opportunities we have to connect families, advance research, and make sure these children are seen and understood.
Thank you for supporting my family and helping us awareness on my very special daughter. I am so lucky to have all of you in our lives as well.
Learn more or support XGS research through the Xia-Gibbs Society:
www.xia-gibbs.org
