When my family moved into the little village twenty-five years ago, we were first welcomed by the Lewis family. They were energetic, compassionate, salt of the earth people. Their avocado green house and summer parties open to all have been as much of a staple in the neighborhood as they have. And it was in the company (if not instigation) of their children Jenny, Charlie, and Danni that I went exploring, sledding and mud pie making.
When I heard that Jenny's daughter Rory that had been diagnosed with Tay-Sachs I was unfamiliar with the disease but nonetheless tremendously sad. No one ever wants to witness good loving people go through such heart ache. But, I knew that I needed to do something I to help. I needed to get the word out.
I am not someone who is in the inner circle for this hardship. I cannot tell you what it has been like to be on the front lines with Rory battling this illness. So, I turned to someone who could. This excerpt was written by Charlie's wife Laura, Rory's aunt.
"Aurora-Colleen was born June 25th, 2013.
Her entire family gathered together to joyously welcome "Rory" into the world.
As we passed her to and from loving arms, we blessed her with kisses. Wishing her a future filled with happiness and love, never knowing that a terrible ticking clock, counting down her days, had already been set in motion...before she was ever born.
Rory was a normal baby at birth, healthy and sweet, but by her 6 month birthday it had become obvious something was wrong. She could still not sit up on her own, was not grasping at toys and seemed to be slowly losing her ability to even hold up her own head without support.
Her doctors believed her to have a mild developmental delay and scheduled her to begin physical therapy and promised to "get her caught up" within a month.
Time passed with no improvement and Rory was scheduled to have more tests done including an eye exam which showed a "cherry red spot" on her retina...Tay-Sachs had left its calling card.
Tay-Sachs is an extremely rare genetic disorder in which the child is born without an essential enzyme called Hex-A. This allows gangliosides to build up in cells leading to destruction of the nervous system.
The official diagnosis came in just before Aurora's first birthday. We were told there was no treatment, no cure, only a slow decent into blindness, deafness, paralysis and an early death. "
In early November 2014 it seemed that it was time for Rory's brilliant light to go out. This page has been dedicated to support her family in this difficult time by easing the burden of her substantial medical bills and impending funeral expenses.
When you are part of such an amazing community filled with love and support, that follows you for the rest of your life. I am hoping that the story of a little village with little family full of love inspires you to love a little more.
Please help share Rory's Story to spread awareness of this terrible disease. You can learn more about Tay-Sachs on the National Tay-Sachs Disease and Allied Deiseases Association website www.ntsad.org
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