When Ashley and Connor Henderson received news that they were pregnant, the family was overjoyed. After all, the Henderson family already had Liam and was hoping to add another child to the mix. The ultrasound pictures had the family even more excited. But then, according to Mountain News WYMT, the family received a bombshell: that genetic testing showed that their daughter, Hailie, would be born with Apert syndrome, a rare genetic disorder characterized by skeletal abnormalities.

The Henderson Family Story

At first, Ashley felt unsure of how to proceed. What was Apert syndrome? How did having this condition affect her daughter’s future? She admits that, upon first hearing the news, she was “freaking out,” unsure how to handle the news that her daughter may experience anything from fused fingers and toes to abnormally fused skull bones. However, since Hailie’s birth 2 years ago, the Henderson family has not only worked to ensure a safe, happy future for their daughter, but to raise awareness around Apert syndrome and connect with others.

When Hailie was first born, the Henderson family noticed some skeletal abnormalities often associated with Apert syndrome. For example, her fingers and toes were fused together; the family refers to the shape as “rosebuds.” Although recent surgery was able to separate her fingers, the experience opened Ashley and Connor’s eyes to the things we take for granted: having functional fingers, being able to reach out for support.

Now, the Henderson family continues to speak up about Apert syndrome: the good, the bad, the frustrating, and the beautiful. While Hailie has some developmental delays, she is bright, bubbly, and full of laughter. On their Facebook page, the family covers the various hospitalizations and surgical procedures that Hailie undergoes. The family also discusses what it’s like to raise Hailie alongside Liam and their new brother Owen! Altogether, the family is doing a beautiful job at raising awareness, connecting with the rare disease community, and supporting their daughter.

Interested in learning more about the Henderson family’s journey, connecting with them, or simply supporting Hailie? Check out the Hope for Hailie Facebook group to learn more.

Apert Syndrome

Normally, during fetal development, a specific gene guides bones to join together at the right time. However, patients with Apert syndrome, a rare genetic disorder, have a spontaneous gene mutation which causes premature bone fusion. As a result, patients undergo craniosynostosis, when fibrous joints between the bones of the baby’s skull close before the right time. Many patients with Apert syndrome experience abnormal skull development, seen in a distorted head and face shape, but may also experience premature bone fusion in other areas of the body. Apert syndrome affects an estimated 1 in every 60,000-80,000 births. Symptoms and characteristics include:

• A long head with a high forehead
• Underdeveloped upper jaw
• Wide-set and bulging eyes with eyelids that may not close properly
• Sunken middle face
• Fusion of the fingers/toes (syndactyly)
• Sleep apnea
• Recurrent ear or sinus infections
• Hearing loss
• Intellectual and developmental delays
• Cleft palate
• Vision difficulties
• Increased sweating

While some symptoms associated with Apert syndrome could cause complications, many people with this condition have a normal life expectancy.

Learn more about Apert syndrome.