DREAM BIG AND FIND A CURE FOR CLARA AND FRIENDS
I would like to introduce you to my granddaughter, Clara Mae Obermeier. Clara is 2 years old and was born with Usher Syndrome 2A. There are no words to explain the blessings grandchildren bring to your life. Clara is fun, smart and loves life to the fullest. She has a smile that melts our hearts and she truly wants EVERYONE to be a part of every adventure she goes on. She will always say; “Mommy go too? Daddy go too? Mi Mi go too? Poppy go too?” It’s as if she doesn’t want anyone to miss out on the next great adventure in life. She loves pretend play, Sesame Street, and giving her a sucker always puts the biggest smile on her face.
When Clara was born, she was diagnosed with moderate to severe hearing loss in both ears. As a family we were devasted but we leaned on our faith and knew our path would eventually become clear. It took 4 months to get the genetic test back which informed us she had Usher Syndrome 2A. When we heard those words, we had no idea what it meant. We soon learned that along with hearing loss Clara would start to lose her eyesight in her teen years. We quickly began to research this genetic disease and educate ourselves through conferences offered by the Usher Syndrome Coalition. It was then we understood that Usher Syndrome is unknown to most people.
We all seek and want the best for our kids/grandkids. So, we thought, why did God bless us with Clara? What can our role as grandparents be? The answer that came to us was “DREAM BIG”. What do we mean by this? Well, it’s a new year and we are excited for new research that is taking place for Usher Syndrome. Our prayer and hope is for there to be a “CURE FOR CLARA AND FRIENDS” in the coming years. But research for a cure takes money.
