A year ago the head of the Brendan B McGinnis cCMV foundation asked parents to write letters to Mrs. Obama to raise awareness of CMV. The letters were compiled but not delivered until today. Today the letters from ~100 families were hand delivered to President Obama by Tracy McGinnis where she met the President and gave him an overview of CMV with her sons - including Brendan who is severely affected by cCMV. President Obama said he will read each letter and I'm so proud my letter and a photo of Emma was included in the information Tracy gave our President.
In case you are wondering what I said, here is my letter with a couple of items edited out for the web because some information is still best left off a public blog ;-)
Dear Mrs. Obama,Today I am writing to tell you about how a seemingly insignificant virus has changed my life. Cytomegalovirus, or CMV, is a very common virus and many times the symptoms are similar to the common cold. However, when a woman who is pregnant gets effected by CMV it can cause a variety of problems with the unborn child. I had never heard of CMV, was not counseled on it during my prenatal visits (where I was advised about toxoplasmosis and other obscure viruses), and did not even know I had contracted CMV until my baby was 3 months old.Emma had an uneventful birth. She was a planned pregnancy and I attended all my prenatal visits. I did not drink, smoke or do anything that could harm my baby. I had gone to college, worked several years, completed a graduate school program, met and married the man of my dreams, had my first child and was very excited about my second baby. I was so excited to find out she would be a girl - I would have two girls - sisters! I love the bond that sisters have and was so happy to finally meet my little baby Emma. So when we found out she was deaf when she was 6 weeks old we thought it must be due to genetics. Upon going through the process of determining the cause of her hearing loss we found out the cause was from CMV. We found it out on Dec. 31, 2007 and promptly went home and googled CMV and baby and I can tell you it was a horrible way to ring in the new year. There were no positive messages about the impacts of CMV on babies and many references to death and severe disabilities. I sobbed for hours and kept looking at my baby who I thought was perfect in every way and thought it must all be a big mistake, that the virus CMV was not the cause of her hearing loss.Fast forward to today. Emma is now 4 years old. She has a loving supportive family. She also is deaf and has cerebral palsy that effects every part of her body. She cannot sit independently, hold her head up for prolonged periods of time, crawl, walk, talk, feed herself, give herself her own bottle. She can smile, giggle heartily, and melt your heart. She is a smart little girl who knows her colors, animals and many other things. We are working hard to give her a communication system so that she can tell us more of what she knows!I don't know what the future holds, but I sure do know that she is one loved little girl. Her father, her sister and I include her in all our activities. But, her direct care needs are high. I no longer work and it is very hard financially. I worry constantly about all the political discussions about health care and cutting back on Medicaid funding. We pay about $X/month for health insurance and it does not cover therapy for chronic conditions (cerebral palsy is, not surprisingly, considered a chronic condition) and it excludes all hearing coverage including cochlear implants. Emma has bilateral implants that she uses to hear and they require maintenance and auditory therapy. Emma is making a lot of progress with physical movement, but it is a constant battle with insurance to obtain the equipment she needs to lead a better quality of life. While I love my daughter with all my heart, I would love to prevent other families from having to see the effects of CMV on their child and from the sleepless nights worrying about their well being and how to pay for their care.I imagine that when you were going through prenatal visits you had not heard of CMV and it is by the grace of God that you did not find out about it when your baby was 3 months old and not meeting her milestones. I know we can do a better job of educating women about CMV and how they can prevent the leading cause of non-genetic hearing loss and cerebral palsy. More children are affected by CMV than spina bifida, fetal alcohol syndrome, or downs syndrome but yet people are still relatively unaware of the effect CMV can cause on their unborn baby.Please help us spread awareness of CMV. Please continue to fight to keep Medicaid available for our disabled children.Thank you for your time and consideration. I'm attaching a photo of Emma for you. She is my hero. If you are ever in the Philadelphia area I would love for you to meet her. I know she will forever touch your heart. You can reach me at: My email isBest Regards,Kristina , Mom to two beautiful girls, one severely impacted by CMV