Stop CMV Letter to Parents

March 28, 2009

Dear CMV Parent:

I want to introduce myself. I am the Long Island STOP CMV Representative for STOP CMV - The CMV Action Network. STOP CMV is a grassroots organization with a basic, informative, virtual presence online, working to foster awareness in our communities via public awareness campaigns. The CMV Action Network is comprised of families, friends and medical professionals personally affected by CMV and committed to public education efforts to prevent future cases of the virus. It ‘s mission is to educate women, families, and the public about the dangers of congenital CMV by offering information on the virus, as well as information about testing, transmission, and prevention. We also hope to empower women and families already affected by CMV to educate their friends and communities about the risks associated with CMV infection during pregnancy.

I am writing this letter to all those families who have registered on the National Congenital CMV Registry (Parent to Parent Support Network), and live in the tri state area. I wanted to introduce myself, the organization, and get to know other CMV families. I am a psychologist with a private practice in East Norwich, NY. My daughter, Ashley, is a 6 ½ year old first grader. Her younger brother, Noah, is 4 and was born with Congenital CMV. We found out during his routine 20 week sonogram that he had what was called “echogenic bowel” or bright spots on his bowel. This led the obstetrician to run a torch screen on me. I found out that I had been exposed to a primary infection of CMV. Noah was born on the Northern State Parkway, en route to the hospital. He was delivered by his father. At 8lbs he looked like any other healthy little boy. He was tested for CMV because we knew of my exposure. He tested positive, and from there we ran hearing tests, ct scans, mri’s and everything else they needed to. We participated in a study for an oral anti viral medication that was supposed to address the progression of hearing loss, which is a trademark effect of the CMV. Right now, Noah is an active, social, and happy four year old. He attends a special education preschool which he loves and has a moderate to severe hearing loss, microcephaly, right hemiparises, seizure disorders, and global developmental delays.

In November 2008 I went to the National CMV Conference at the Center for Disease Control, in Atlanta, Georgia. It was an overwhelming experience to be surrounded by those physicians who are working on vaccines and treatments. It was an enormous pleasure and privilege to meet for the very first time other mothers, fathers, and grandparents who shared my experience of having and raising a child with CMV. All of our children vary in ages and in the degree that they are affected by this devastating virus. Janelle Greenlee is one such mother. She is the founder of The STOP CMV Action Network. I wanted to become a Stop CMV representative to aid in her efforts to increase awareness and support of others. Tracy McGinnis is another parent. She is the founder the CMV Foundation, a not for profit organization. Tracy has organized a dozen awareness events throughout the country on May 16, 2009. Enclosed you will find information on one that I am hosting in Long Island, NY.

In addition to finding other CMV parents and friends who would like to join my mission to prevent and get the word out about Congenital CMV, I am hoping to connect with others who have a child with CMV. To me connecting with others is priceless. If you can think of anything that the area chapter of the STOP CMV Network could provide please feel free to call or send me an email at Lkelli@aol.com.

Please feel free to visit online http://www.stopcmv.com/ or their discussion boards to connect with others or ask questions. Also feel free to visit online http://www.cmvfoundation.org/ to get more information on the events going on in May. http://congenitalcmv.blogspot.com/ is a blog written and put together by Lisa Saunders, another CMV mom and author of the memoir “Anything But a Dog! The perfect pet for a girl with congenital CMV.”
Sincerely,


Lynn Pickus, Psy. D.