Chromosome abnormality

5/23/11 Monday
Sharing is caring, and in that spirit I wanted to post some information.
I met a nice family while fundraising the other day, their daughter is seven and has not been able to be diagnosed by the medical community.  They say it is some chromosome disorder.  So I put in a call to a friend of mine, she is an amazing mother and has a son with a chromosome abnormality, though I would never know to be around him.  He is not her only child, she has homeschooled her son along side her other child, worked diligently with him and he recently graduated from high school, his story is nothing short of inspiring and miraculous.
This is what she said, "Dr. Dwight Yim pediatric / geneticist at Kaiser helped them, he flies in from Oahu to Maui.
They also got support from a group called "Unique" based in the UK"
Their web site is;
http://www.rarechromo.org/html/home.asp

http://www.rarechromo.org/html/home.asp


Hope this information is helpful to someone out there.
And yes, I did pass this info. on to the family I met from sunday, networking is very important and word of mouth is very powerful.  My friend found this site years ago through a Google search, she said that they are a great help, and she said that if you have a chromosomal karyotype for your child, they can send it to Unique, and Unique will give them whatever info they have on it, and even contact info of others that have children with similar abnormalities. (if they are interested in contacting others.)