Jessica started like any other child - healthy, happy, stubborn, melt your heart with a smile. Then around 4 years old she started sleeping a lot, gaining weight, wearing pull-ups again, and having what was initially diagnosed as sleep apnea and using a bi-pap at night. Nothing her parents did seemed to have any long term result.Finally after lots of research, extensive testing, many doctors and 3 years they finally get a diagnosis - ROHHAD Syndrome.
Jessica traveled to Chicago to meet with doctors there and learn more about her syndrome. Going through even more testing and many more doctors Jessica was released after about a week and her doctors were informed of the severity of her syndrome.
Jessica is now 7 years old and was recently fitted for her wheel chair. Jessie lives in New York with her family and mother who is a nurse. Although you may think her mom may know what to do for her more than the other mom's but this syndrome just destroys all your normal mommy instincts and being medically trained can't contain your feelings of guilt. Jessica, like the other kids, just wants to go to school and play like the other kids. This syndrome just doesn't let them do that.Mary, Jessica's mom, has become a great friend and although we've only known her a short time she's a welcomed addition to our family. You are doing a great job out there. We love Jessica and will be here with her for the journey!
this is my little cousin, and i love her dearly.
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