Emily’s Story

I like to think of myself as your average sixteen-year-old. I love to read, go shopping, go to the beach, watch House, dance and do yoga. I dream of going to college and becoming a pediatric nurse, so that I can give back the nurturing, care, and kindness that has gotten me through my whole life.

I was never a healthy child. When I was about two years old I was diagnosed with a kidney disorder known as Hypercalciuria, meaning that I get rid of too much calcium through my urine. This causes excruciating kidney stones and osteoporosis from the lack of calcium. It also causes an imbalance of electrolytes. I soon started to have involuntary movements and sounds which were eventually diagnosed as severe Tourette's Syndrome. Later, I began to have a very poor appetite and eventually wasn’t able to keep any food or liquids down. The doctors called it the most severe case of Irritable Bowel Syndrome that they had ever seen, and I also suffered from severe dysmotility in my digestive track. I became extremely emaciated and had no other choice but to get a feeding tube placed.

It was during this two week hospital stay that the Child Life Specialists introduced me to Starlight's online community Starbright World. Even though I was isolated in the hospital, Starbright World allowed me to connect with chronically ill teens all over the country! I was so excited because at that point in my life, I had very few friends that could handle the severity of my illnesses. Within 10 minutes of logging on I had other users instant messaging me, and relating to my situation in the chat room. I was ecstatic and never wanted to get off! There are so many inspirational people going through incredible struggles that still manage to make me smile, laugh and basically just have an amazing time. I've been in the hospital and ER over 50 times, and now go online even when I’m at home getting treatments or feedings. Starbright World never fails to make me smile, even when I'm in pain. All of the incredible teens on Starbright World have shown me the true meaning of love, compassion, and understanding, and for that, I am forever grateful!