Read about Sarah, a sweet girl with not only 1p36 Deletion Syndrome but also a fighting spirit!

Kylee, Sarah's mom, shares about her daughter...

When I was pregnant I was so sick in the first few months, and it seemed to be morning, noon, and nighttime sickness! At twenty weeks, I found out I was carrying twins, and at that time they thought there was something going on with Sarah. That one day began an emotional roller coaster ride that six and a half years later we still haven't been able to exit. The doctors in the beginning kept putting us off, but since Sarah had a twin sister for us to compare her with, we knew something was not right. Finally, at nine months we got the diagnosis through FISH testing.

It was over-whelming to actually have a diagnosis, and very scary to start reading all the research. I am so thankful to now have the support of people all over the world through our yahoo support group and many facebook friends. Sarah has epilepsy, scoliosis, syringomyelia, eosinophilic esophagitis, feeding problems, sleep problems, and a few other minor issues! I have learned so much from this precious child, and she has shown the world her fighting spirit after spending four weeks on a ventilator this spring. It is not an easy life that we live, but I wouldn't trade either of my girls for the world!