HAMPSTEAD, Md. — Many people may not know what CDG, or Congenital Defects of Glycosylation, is so Governor Larry Hogan is helping a local family raise awareness.
The Linthicum family is only one of two families in Maryland to have children with this very rare disease. The family has one daughter, Alexa, who is living with the CDG-PIGN, and another daughter, Holly, who passed away at only 2-years-old.
Since the condition is so rare, the Linthicum family is dedicated to trying to spread awareness.
Governor Hogan agreed there needs to be more understanding of this disease, so he made a proclamation of CDG awareness to be acknowledged on May 16.
There are approximately 200 cases in the United States, but it's said that there are still children who are misdiagnosed or undiagnosed. That is why raising awareness is so important.
"I don’t want other families to have to fight so hard, like I did with Holly," explained mother Ashleigh Linthicum. "The support was there from doctors and nurses, but they had nothing to compare to. There was no way of comparing what she went through to another person to determine what would be best to help her."
Click here to learn more about CDG.