September is officially Craniofacial Acceptance Month. Every year, advocates and families band together to help shed light and encourage the acceptance of those diagnosed with a rare disease that can cause facial distortion.
One family that lives in the valley, has had to experience it first hand. 9-year-old Jordan Watkins has gone through multiple surgeries in his short life span. His mother, Dorina Watkins, says its been a long process.
“It’s like, you know they have to have surgery, you pray that everything goes as planned. Sometimes it doesn’t, as the last surgery,” Dorina Watkins said.
Jordan’s most recent surgery in July caused him to lose sight in one of his eyes.
Jordan was just months from turning 5 years old, when he was first diagnosed with an extremely rare condition called Crouzon Syndrome. It’s a genetic form of Craniosynastosis. The condition is when sutures in the head are prematurely fused, resulting in abnormal growth of the skull and face.
“It can affect the hearing, of course the mid-face and not being able to breathe and overcrowding of the teeth.”
As a result, Jordan has been in and out of the hospital. He’s had to miss weeks of school. Fortunately, he’s also met some new friends along the way. The family has paired up with an organization, Children’s Craniofacial Association. Watkins says its helped them connect with other families going through similar situations. The organization also provides financial support for things like gas and food when Jordan and his family travel in between appointments.
As for Jordan’s next step, doctors are set to remove titanium distractors from his skull next month. That will also require some recovery time.
For more information about Children’s Craniofacial Association, we’ve attached the organization’s website link below.