Emma was born in 2013 and is a very spirited seven year old little girl. She has been through a lot of challenges in her short life (cancer treatments, ER visits, tons of visits to specialists, hospital stays…), but she lights up the room and brings happiness to everyone around her!
She is very strong and will not easily go along with things she does not want to do. In fact, at a very young age, we stopped being concerned that her big brother, Evan, would be too rough with her and became more concerned that she would beat up on him! Early on, at a routine visit to the eye doctor to verify her eye pressures were still ok (little puff of air into her eyes…which…she hates…), me and the doctor fought with her for 15 minutes to do this simple test. Afterwards, Emma walks up to (our amazing) doctor like she is going to say hello, and bites her on the leg! Doc says “well, she certainly told me!” My girl will not be pushed around in life.
She has a wonderful imagination and loves playing with dolls/toys... making up all kinds of scenarios. She just finished kindergarten last year and never stops talking. She is learning to read and write and, while she isn't as far along as her other peers, we are so proud of how far she has come!
When Emma was first diagnosed with aniridia and WAGR syndrome as an infant, we felt an almost overwhelming sense of darkness. However, we are here to say that our world is not dark anymore. Yes, there are challenges with raising a child with complex needs, but there is also a lot more light and a lot more joy. She has united our family and friends in a way that never would have happened had she not come along. We love you and are so thankful for you, Emma!!
International WAGR Syndrome Association
PO Box 2875
Montgomery Village, MD 20886