"My daughter, Kristen, was born 10:58am on April 5th, 1982 weighing 6lbs 1oz after a full term, non-eventful second pregnancy. I was 33 at the time..."

When she was first brought to me I noticed her skin was covered with little red dots. The nurse told me it was from the pressure of the delivery and the fact that her skin was so fair.

She cried all the time. Nothing consoled her. At 8 weeks I found she had an inguinal hernia and she was hospitalized the next day. A week later her pediatrician, on a routine exam, found a grossly enlarged liver and spleen. She was admitted to Albert Einstein Hospital in the Bronx and after a liver biopsy we were given the diagnosis of CMV. At that time (25 years ago) not much was known and we were sent home. My pediatrician did some reading up on CMV but there was not much information available.

She responded to spoken words by smiling but had little physical movement. I kept telling the pediatrician that I thought something was wrong because she was not holding up her head or attempting to roll over. At 8 months of age she was diagnosed with a dislocated hip and was referred to a local rehabilitation hospital where she was evaluated as having the physical ability of a 3 month old. She then started physical and occupational therapy and started to respond quickly. We still did not have a definitive diagnosis.

Over the course of the next 6 years of rehab she had 3 hip surgeries and continual physical and occupational therapy. There is a day I will never forget. At the age of 2 1/2 I had her at clinic waiting to see the orthopedic surgeon. She was at the point where she would "cruise" furniture and loved to push things. She wanted her stroller so I stood her down on the floor and she took her first steps! I cried because I had my doubts as to whether she would ever be able to walk. She fell down a lot but she always got up again. At the age of 3 I had her enrolled in a special pre-school (luckily in my neighborhood) that specialized in children with special needs. When it was time for kindergarten I convinced the school district to "try" her in regular kindergarten even though she was small for her age and physically challenged. She adjusted very well even though she had teachers that were not trained for special needs children.

At the age of 6 we were told by the school nurse that Kristen had failed a hearing test. Upon referral to an ear, nose and throat specialist and a CAT scan we learned that she was deaf in her left ear and that the CMV had affected the cerebellum (it had atrophied and the surrounding area was filled with fluid) but none of that could be reversed. She received some physical therapy in school but it was not until she was 9 that she was given the help of a teacher of the hearing impaired. That teacher was wonderful and for the rest of her time in school became her "second mother". Kristen was able to have a second set of textbooks at home so she did not have to be carry books back and forth and she was allowed extra time to move from classroom to classroom.

She excelled in middle and high school and then it came time to think about college. She did not want to go far from home and we were totally shocked when on senior awards day she was presented with a full scholarship to a local college that was literally "down the hill" from her high school! During her college years she decided it was time to think about learning to drive. That was a real challenge. I had taken her out some but I was not the right person to teach her. She enrolled in a driving school and after 6 attempts passed her driving test. That was a definite highlight in her life. She graduated from college in May 2004 with a BA in English and then had the challenge of finding a job. She persevered (with some pushing from Mom) and was offered a job in December 2004 working for a company that processes newspaper subscriptions.

Today she is a happy, well adjusted 25 year old young lady that has overcome obstacles that have been placed in her path with a smile and a will to do the best that she can do.

- Submitted by her mother, Mary

"I guess I had a pretty typical childhood. My brother, Peter, is 4 1/2 years older than me, and I went through a phase of wanting to do whatever he did..."

That’s why I played several years of Little League baseball (mostly T-Ball), until it became very clear that sports were not my thing. I was in Brownies for a year, because Peter was in Cub Scouts. That also didn’t last. It kind of took a while for me to realize that trying to fit in with "normal" kids wasn’t going to work. I just had to accept the hand I was dealt, and try to deal with it as best I could.

School was always a challenge for me. Not so much academically, although I struggled in math quite a bit. The worst for me was definitely gym. It was always frustrating to see other kids do things like make a jump-shot, or hit a home run, and think, "Why can’t I do that?" But luckily, I found my strengths in the classroom, and that helped even things out. I was always very good in language arts and reading. So whenever I would feel tempted to get discouraged over some of the things I couldn’t do, I would remind myself that I had talents, just in other areas.

In first grade, I was put in a Special Ed. class for most of the day, and I would only join my peers for things like art, music and gym. I don’t think I really should have been kept separate from the others because it made me feel like an outsider. I never had a chance to get to know my classmates all that much. Plus the fact that my Special Ed. class was doing reading that was far below my abilities. I could easily have kept up with a regular first grade class, in that area at least.

After that year, I was placed in a regular classroom, but was given special help, such as being able to sit close to the board, extra time for tests, etc. Most of my teachers were very willing to accommodate my needs. Things became even better in 4th grade, when I finally met with a teacher of the hearing impaired. She helped make sure all my teachers were aware of what my needs were, as well as helping me to stay organized, which was never an easy task! She basically stayed with me from then through high school. That was a great comfort to me when I moved from one grade to the next, knowing that I was already familiar with at least one of my teachers.

For many teenagers, a driver’s license is a major achievement, offering independence and freedom from parental control. Unlike a lot of my peers, I never really felt any great need to learn to drive. I rode the bus to school and to my part-time job. Plus I had a number of nearby relatives who could offer rides in a pinch. So I never even got serious about getting behind the wheel until after high school. In retrospect, I wish I had acted sooner. From past experience with things like riding a bike, I already knew I would take longer to learn than most people. But because of my late start, I don’t have as much confidence in my abilities as I should, in spite of having my license (after six attempts at the road test!).

I was fortunate to go to a college that had a program for students with special needs, and I did receive a certain amount of accommodations there. Mostly I was given extra time for tests, or being able to type assignments rather than hand write them. Initially, I planned to become a teacher, and possibly use my experiences to help other students in a similar situation to mine. When that didn’t work out, I changed my major to English, and managed to get a B.A., with a minor in psychology, thanks to all the education courses I took.

Although I am working full time now, I am not sure what I ultimately want to do with my life. But my parents raised me to have a "can-do" attitude, and to focus on my abilities, rather than my disabilities. So whatever I end up doing, I’m sure it won’t be defined by my CMV.

- Submitted by Kristen