People Who Are Caregivers

posted 05/28/2009, comments (3)

brand new to site

I have just finished reading Quinn's book, "A Different Life" and it has given me hope. Although my son has not yet been officially diagnosed with VCFS, after reading his book and finding info on the NIH website, I have a strong suspicion that the current work up will confirm it. It's frustrating as a parent knowing that although your child... Read more

posted 05/27/2009, comment (1)

Quinn, please keep writing books about your life...

There are not a lot of books about young adulthood and learning disabilities.  Our school system was great with my son until high school graduation.  After graduation, we had to improvise about coping with college and the fallout (not too successful, no support in school, parents far away) and develop plans for the future. ... Read more

posted 05/18/2009, comment (1)

inspiration

Hi before i type anything i wish to appolijise as i have never blogged before and am not really sure what i should be saying.   Firstly let me say that i saw an interview on Quinn with his parents on an American news program here in Australia and was immediately inspired by this fabulous young man.  I just sat back and listened... Read more

posted 05/12/2009, comment (1)

finding school

Hi my name is Gisela.  I have a beautiful little girl who was born with VCFS or 22q deletion.  I am having a very tough time trying to find a school for her.  A school where i can say i am not worried.  She has special needs. -speech, occupational, and physical.  So far her behavior is O.K.  We are going for a... Read more

posted 05/11/2009, comment (1)

Katelyn my Joy

Katie is now 13 years old.  When she was an infant she was diagnosed with Caudel Regression Syndrom.  Later we found that VCFS was in her genetic makeup.  Katelyn has been a delight for us, she reminds us daily that it is the small things in life that really make a person happy.  With her love for all animals, bright smile and... Read more