Jessika, age 6

Jessika was born March 24, 1992. She was premature by 6 weeks and weighed 6 pounds, 13 ounces. She was a beautiful baby with silver hair that stood straight up. Jessika had a failure to thrive, we manipulated her jaw to get the baby formula into her body. When Jessika was 2 months old we got a referral to a UCPA Center. They told us that Jessika was hypotonic and dysmorphic. That meant that she had poor muscle tone and a failure to thrive. The speech therapist immediately started us on feeding therapy to help teach her to eat. Within a month we were in a group therapy program for physical therapy. Early intervention was a life saver for us.

When Jessika was 2,we started going to the Robert Warner Rehab. Center affiliated with the Children's Hospital of Buffalo At this point in her life she was eating everything in sight. I thought it was great because she wouldn't eat for so long. I actually bragged that my little girl could eat more than most adults!

In the month of September, 1996, Jessika was diagnosed with having Prader-Willi Syndrome. I was no longer bragging about her eating habits. My once tiny girl now weighed 65 pounds. We stopped giving her anything with high calories or fat. It has been a year and a half now and she has maintained her weight.

Now I will tell you about my little princess as a person with Prader-Willi Syndrome. Since she has been diagnosed we have told her everything about the syndrome that we learn. Jessika doesn't understand some things, but she knows that there are a lot of things she can not eat because of PWS. When we go to a restaurant she will tell the waitress "No French Fries!" Don't get me wrong, she will still eat anything put in front of her, but if it's not offered it won't bother her. She also wakes us up 2-3 times a night to let us know that she is hungry. When I tell her it is still night time to go back to sleep, she cries herself back to sleep.

Jessika still goes to speech therapy 4 times a week. She can't talk clearly, but she sure does get her point across!! All of her teachers love her. She is a very loving person with a very stubborn personality. When she has her stubborn temper tantrums it is sometimes difficult not to laugh at her. At other times you want to cry for her knowing she can't help herself. She loves to give hugs and kisses. Jessika is truly a blessing in every person's path that she crosses!

Since we found out about PWS, Jessika has started dance lessons with Dance Special. Dance Special is a non-profit agency for children and adults that are differently abled. She did a solo on stage last year in front of a hundred people. Jessika also takes ice skating lessons with SABBAH.{Skating Association for the Blind And Handicapped} Last year she skated in front of thousands of people. My little girl also bowls and plays soccer. This summer she begins swim lessons and T- Ball. So you see, it is very important to keep your child with PWS very busy. It keeps her mind full of activities instead of food and keeps her body full of muscle tone and endurance instead of fat.

Jessika is the best thing that ever happened in my life. I feel fortunate that I was chosen to raise such a special, loving person! I look forward to a long and happy lifetime with my daughter. If you need to contact me by e-mail use:

Jeannie at barmcm@apollo3.com