minnow's place

Calvin/Aaron I have a 8 year old son with CHARGE Syndrome. In my wanderings through the medical problems, finding answers and just wondering why, I found that there isn't much infomation out there for parents of children with CHARGE. So, in doing this page I have put together some of the information that I have gathered. Hopefully I have put together some things that I have found helpful. The information here is not just for parents of children with CHARGE, but can be used by anyone that has anything to do with a child with disabilities. Following is a short description of CHARGE Syndrome and a description of my son's problems. There is also a list of some of the places that I have found to be informational and helpful.

CHARGE Syndrome

CHARGE Syndrome refers to children with a specific set of birth defects. 'CHARGE' originally came from the first letter of some of the most common features seen in children with this syndrome.

C = for coloboma and cranial nerves
H = heart defects
A = atresia of the choanae
R = retardation of growth and development
G = genital and urinary abnormalities
E = ear abnormalities and/or hearing loss
CAUSES
CHARGE is usually sporadic, and very seldom are other members of the family affected. Recurrence rate is low, 1 - 2%. The risk of an affected person having an affected child may be much higher.
RELATED DISORDERS
Other overlapping features include VATER association, velocardiofacial (VCF) syndrome, and prenatal retinoic acid (Accutane) exposure.


NEW

Craft and Tips Message Board

Check out the crafts and tips for kids. Hints and tips for G-Tubes. hearing, vision and others. Please check it out and leave a tip.





Click on this link to order books, music and videos from Amazon.com.
All proceeds from purchases from this link go to the
CHARGE Syndrome Foundation ,
a non profit charitable organization.
It provides information and referals on CHARGE Syndrome
to individuals,familes and professionals.


NEW


CHARGE Syndrome Message Board
Check it out when you get the chance.


Please check the
CHARGE Syndrome List


CHARGE Syndrome Teen List

An email List for CHARGE Teens and Younge Adults.


CHARGE Syndrome CHAT

Chats are at this time scheduled for Saturday and Wednesday nights at 7pm pacific,
8pm mountain, 9pm central, 10pm east coast.


Please check the
CHARGE Kids Pix Page


Please check the
Pictures from the Houston Conference


NEW


MediBank

A great printable medical database. Keep your family's
medical history on your hard drive where it's available all the time.




UPCOMING EVENTS



5th International CHARGE Syndrome Conference
CHARGE at the Crossroads


July 20 - 22, 2001
Indianapolis, Indiana



CHARGE Family Weekend
Whispering Pines Resort


June 23 - 25, 2000
Cobb California
For information contact Casey







Tapes of the Houston Conference



Sound On Tape


Follow this link to order audio tapes from the 4th International CHARGE Syndrome Conference





Great Web Links



CHARGE Syndrome Foundation OUR KIDS Widesmiles Family Village
Septo-Optic Dysplasia International Craniofacial Institute The Speaker Page AudiologyInfo
Go Hear Special Child Magazine Magic Foundation Queensland CHARGE Group
DB LINK Listen Up Canadian Deafblind and Ruebella Association Deaf Resources
UK CHARGE Family Support Group CHARGE Syndrome
in spanish
CHARGE Syndome
in Japanese


Please remember that this page is being updated constantly. Check back frequently for further updates!


If you have any questions or comments please E-mail E-mail Minnow.


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Last updated April 1, 2000

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