This is my beautiful cousin, Maria. Maria Webster is 5 and has a rare enzyme deficiency called ALG9 deficiency; also known as congenital disorder of glycosylation 1L (CDG-1L) or ALG9-CDG. She struggles with severe physical and cognitive delays and frequent seizures. She is content and beautiful, though is unable to walk and has very limited ability to communicate. There is currently no treatment for her condition. In February 2011, Foundation Glycosylation (the FoG) was established by Maria’s family to raise funds in order to support research for therapies targeting CDG.
Please reblog to help raise awareness and help save little children like Mimi <3
www.thefog.ca
You can also read more about Maria and her parents’ perspective in this article.
http://www.foundationsearch.ca/NewsArticles/1%5C119132363RR0001%5C119132363RR0001_20111101_Times%20and%20Transcript_New%20Brunswick%20girl%20struggles%20with%20rare%20enzyme%20disorder_SAINT%20JOHN%20REGIONAL%20HOSPITAL%20FOUNDATION%20INC..pdf

This is my beautiful cousin, Maria. Maria Webster is 5 and has a rare enzyme deficiency called ALG9 deficiency; also known as congenital disorder of glycosylation 1L (CDG-1L) or ALG9-CDG. She struggles with severe physical and cognitive delays and frequent seizures. She is content and beautiful, though is unable to walk and has very limited ability to communicate. There is currently no treatment for her condition. In February 2011, Foundation Glycosylation (the FoG) was established by Maria’s family to raise funds in order to support research for therapies targeting CDG.

Please reblog to help raise awareness and help save little children like Mimi <3

www.thefog.ca

You can also read more about Maria and her parents’ perspective in this article.

http://www.foundationsearch.ca/NewsArticles/1%5C119132363RR0001%5C119132363RR0001_20111101_Times%20and%20Transcript_New%20Brunswick%20girl%20struggles%20with%20rare%20enzyme%20disorder_SAINT%20JOHN%20REGIONAL%20HOSPITAL%20FOUNDATION%20INC..pdf