My husband Aaron and I have a daughter Grace who is just over 5 months old. She was diagnosed with aniridia at just 24 hours old and WAGR syndrome at just a month old. As first time parents we were In total shock to hear this about our beautiful little girl – 1 because we had no idea what it actually was and what it meant for all of us in the future and 2 as first timers everything was new to us anyway so things were very upsetting and stressful.
My husband however found the WAGR page on Facebook and it has helped us a lot with understanding the condition, getting peoples advice, sharing your experiences and getting peoples’ opinions on things as these are the people who know most about the condition, not the Drs in this case as we all like to think. It really is an amazing family to have and we are so glad we found it.
Grace is doing amazingly well, she can see, to what extent we don’t know yet as she is still young, she has no signs of wilms’ as of her last scan and her learning and development is all currently on track.
We are very blessed to have such a special and unique little daughter, she brightens our day every day, and has the most infectious smile.