Portraits

Every month we will feature a new portrait and story of all the remarkable people, families and researchers who are dedicated to bringing awareness and finding a cure for Usher syndrome.

Meet Aurora and Aria Heinzl

 "my six year old has been asking more and more questions about Usher syndrome.  Laying in bed the other night, having our evening chat and cuddle time, she goes to me "Mommy, I don't want to lose my eyesight."  I was heartbroken, trying to keep the tears in and stay strong for my children.  I told her that I did not want her to lose her eyesight either, but that it was all going to be okay.  My hope is that she will not have to completely lose her eyesight.  That there is a cure before she becomes completely blind."

Rory and Aria bring awareness to Usher syndrome

Ruth Heinzl, mom of Aurora and Aria says:

My eldest daughter, Aurora (Rory), is six years old.  She is a super energetic and determined child.  She loves staying active and has a passion for swimming, gymnastics, dance, and rock climbing. Rory also loves to color and make things out of play dough. Aurora is also learning to love the great outdoors.  She loves to go fishing, baiting and taking the fish off the hook all on her own, and is learning how to shoot a bow.

My youngest daughter, Aria, is four years old. She is a incredibly loving child and has a passion for life.  Aria loves to brighten the world of everyone that she meets.  Aria is also a very active child, loving swimming, gymnastics, and dance.  She has also started fishing this last summer.  Aria is obsessed with making dresses for her figurines and other sculptures out of play dough and would do this all day if she could.

 

On May 19, 2015, our lives changed forever.  We found out that both of our daughters have Usher syndrome type 2A.  Of course this is a devastating thing to hear as a parent.  Our children have a disorder that we cannot protect them from.  After this day, my husband and I have attempted to incorporate the understanding of Usher syndrome in our children's lives so they feel like it is just something normal for them.  That even though losing your eyesight is scary, it is something that will happen to them and they will be okay. 

 

Help Rory and Aria find a cure !