Meet Zakry, (pictured with his Mom on petition page) he was born by emergency C Section at a mere two pounds. He was born with 22q and had severe health issues that have continued through the following 20 years. He was not diagnosed with 22q until he was 10 years old. Because of this,he has had an enormous amount of unnecessary suffering as well as his parents. It is time that 22q become known by all doctors!!! These kiddos cannot stand to suffer anymore than they already do, nor can their parents. Please sign the petition requesting 22q/VCFS receive more education and attention in medical and nursing schools, and special education majors also receive more information about it while in school. What is 22q/VCFS? It is a micro deletion of the 22nd chromosome and there are 40 genes missing in each case. Therefore, each system in the body is in danger of being affected. It occurs in 1/2000 to 1/4000 live births. There is over 180 anomalies and characteristics associated with this syndrome and many are life threatening without proper early intervention. Proper teaching of these kids in school is imperative as these kids are often labeled retarded and then treated as such and don't reach their full potential. They learn very differently than the average person, however they DO learn with the proper attention. Some people have not been diagnosed for years and lived a life of medical misdiagnosis, incorrect medical treatment and therapy, that if they had the proper treatment it could have saved them from so much pain and even death. Ninety percent of the time it occurs for no reason at all. It could happen to YOUR unborn children or grandchildren etc. For more information please see the VCFSEF.org page (Click on fact sheet before entering site to see all of the anomalies and characteristics associated with the syndrome). Or go to the DempsterFamilyFoundation.org These kids may suffer through surgery after surgery and do have life long struggles that don't have to be so incredibly difficult with proper EARLY intervention. 22q/VCFS - GOOGLE IT!!!!!!
It is crucial that the requests we are asking for in this petition be strongly considered and agreed to be carried through. Thousands of children and families suffer greatly today because of lack of awareness of 22q/VCFS and a tremendous lack of proper diagnosis and immediate interventions to help these babies who are born missing 40 genes.
Your consideration in 22q/VCFS which occurs 1/2000 to 1/4000 live births is greatly appreciated.
Teresa Napierala - Pyle