Miss Cayli
Deletion 3p26.3
Deletion 3p26.3
Our Journey Through PDD/NOS
Chromosome 3 Support
Finding Support for Children Affected by Rare Chromosome 3 Disorders or Abnormalities...
When I learned about Cayli's genetic condition, I was completely shocked. I was not familiar with rare chromosomal abnormalities; I had only heard of well-known genetic disorders like Down's Syndrome. The geneticists told us that they could not find another documented case of Cayli's 3p26.3 deletion. This meant that they could not tell us what to expect in the future or how to best treat Cayli. I spent a lot of time Googling rare chromosome disorders. As the doctors
told me, there was virtually no information about Cayli's deletion
available-I guess that's why it is called a rare genetic disorder!
During my search, I found a support group for people dealing with rare chromosome conditions, Chromosome Disorder Outreach, Inc., (CDO). I joined it, in addition to Unique, a similar organization based in England; I am so glad I found these resources. Initially, I felt very alone. Being part of a community of people sharing similar difficulties helped me to recognize my blessings and figure out ways to manage Cayli's problems.
There is no official support group for chromosome 3 disorders that I can find. Some other chromosomal abnormalities do have such groups. I have started a Yahoo Group, Chromosome3, that is open to people who are affected by rare chromosome 3 disorders and abnormalities. I hope it can be a place where we can share information and help each other cope with our ups and downs. It is easy to join, you just need to set up a Yahoo account, which is free and quick.
http://health.groups.yahoo.com/group/chromosome3/
Click to join Chromosome3
During my search, I found a support group for people dealing with rare chromosome conditions, Chromosome Disorder Outreach, Inc., (CDO). I joined it, in addition to Unique, a similar organization based in England; I am so glad I found these resources. Initially, I felt very alone. Being part of a community of people sharing similar difficulties helped me to recognize my blessings and figure out ways to manage Cayli's problems.
There is no official support group for chromosome 3 disorders that I can find. Some other chromosomal abnormalities do have such groups. I have started a Yahoo Group, Chromosome3, that is open to people who are affected by rare chromosome 3 disorders and abnormalities. I hope it can be a place where we can share information and help each other cope with our ups and downs. It is easy to join, you just need to set up a Yahoo account, which is free and quick.
http://health.groups.yahoo.com/group/chromosome3/
Click to join Chromosome3
