I am June Kuntze, and had my son Ryan in 1988. When he was diagnosed with WAGR syndrome and subsequent bilateral Wilms tumors, I was frustrated that I didn’t know anyone with a child like Ryan. I so wanted to talk with another parent as to what may lie ahead. One day I put a letter in the Exceptional Parent magazine. Several months later I received two letters on the same day from parents who also had a child with WAGR. I was ecstatic. I started a newsletter and eventually had 25 families. Annie P. took it over and ran with it! And WAGR officially was launched. It warms my heart that the work of so many with Annie made it what it is today and that a new family can easily find information on the WEB.
My son Ryan has come a long ways. He had chemo for 6 months when he was 14 months old, has had a number of surgeries over the years, has Focal Segmental Glomerular Sclerosis, and now lives in a group home after the tragic death of my husband and his dad when hit by a drunk driver. He has adjusted pretty well and calls me every day on the phone. He does gets very stuck (OCD) behaviors, but he has great enthusiasm and joy for simple things. He loves Special Olympics and winning medals. He especially loves arcade games and winning prizes. He is amazingly good at them with his decreased vision from aniridia. He attends a day program called Opportunity Partners which is wonderful. Ryan loves bowling and last summer bowled a 216 without bumpers!!! Every game he bowls he says “perfect game today, right”?
I have not been able to attend any of the WAGR Reunions, but sometime hope to do so. The network of support online is awesome.