Dear Family & Friends,
We have created this website to educate and provide updates for you about our daughter, Bianca.
We also hope to share her story with those who may have similar experiences.
Bianca has been diagnosed with a very rare genetic condition called CDG or congenital disorder of glycosilation. There are less than 1,000 children who have been diagnosed with this disorder worldwide.
We recently received the results of Bianca's subtype analysis and learned that she falls into the most common subtype group of CDG 1a.
There is a wide spectrum of severity for this condition, but so far Bianca’s symptoms appear to fall on the mild side. For that we are grateful.
Larry & Andrea