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!!
March 7, 2021
This is Selma. She is 1 year and 8 months old and lives in Norway with her mom, Andrea, and her dad, Simen. Selma is a very active and happy girl full of joy for life who loves to be with oth…
February 19, 2021
This is George. He is 6 years old and lives in the south East of England with his brothers Zachary (5) and Jacob (8). George is such a light in our lives. He loves nothing more than listening…
October 6, 2020
Mia lives in the USA and is 2 and a half years old. She has two rare syndromes called WAGR-O and Potocki-Shaffer. Mia was diagnosed blind at 6 months old and at 10 months they gave us genetic…
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