Texas Mom Spreads Awareness Of Son’s Rare Condition In The Skull

By Junrell, Parent Herald March 17, 04:30 am

A Big Country mother is speaking out about her son's "soft spot" condition in the skull to eliminate the strange looks he usually gets every time people see him. She also wants to spread awareness about the rare condition so that parents will be able to detect it at an early stage.

Fox News reported that Marissa Davis, a mother from Abilene, Texas, discovered that her five-month-old son Kamden is plagued with a rare condition called sagittal craniosynostosis. The rare condition has made her son's skull to grow abnormally with a "soft spot" on the front. This has made Kamden to wear a helmet to correct his misshapen skull.

"I noticed a ridge on his head, and I also noticed that his head was growing only longwise, elongated," Davis said. After the observation, she researched about his son's possible condition and found that it could be sagittal craniosynostosis.

According to the National Organization for Rare Disorders, sagittal synostosis is the most common form of craniosynostosis that usually results to abnormally long, narrow head. It is caused by the premature closure of the joint called sagittal suture.

Davis told Big Country Homepage that she was lucky to discover her son's rare condition at an early stage. Because of early detection, Kamden only had one surgery compared to other sufferers who have to undergo Cranial Vault Remodeling to rebuild the entire skull.

"If you think there's something wrong or that your child has an abnormal shaped head, go to your pediatrician, because a lot of these kids go undiagnosed for many years. There's a lot of great pediatricians here in Abilene that know about this condition, but just ask questions, be an advocate for your child," Davis stated.

Moreover, Davis disclosed that Kamden has been getting blank stares every time she brings him to the grocery store. She said she that would rather be approached and asked about his son's condition than getting strange looks.

Davis said Kamden's helmets cost around $3700 each and he will need five or six more of them until he turns 18 months old. With this, she and her family are holding a garage sale fundraiser at a local church to accumulate money to purchase the helmets.

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