Wednesday, December 28, 2016


END OF THE YEAR....donate if you can.

It was July 1962. She was almost 25 years old, 5'2" and barely 100 lbs. She had auburn hair and green eyes, she was kind, generous, creative, smart and fearless and beautiful. She never complained about the hand she was dealt. She was our mom.

She woke up one morning without the vision in one eye. I was 5 years old. I understood what BLIND meant but everything else was lost on my level of understanding.
My dad tried to explain what was happening in our home and how our lives would change. But someone forgot to tell my mom...because on that same morning, mom said, "jump in the car, I'm driving you to school."

I did jump into the car. I was standing on the floorboards in the back seat, straddling the hump of a 1940 something Buick, holding onto the front seat, just behind my mother's right shoulder. As we pulled out of the driveway, I'm waiting for someone to remind my mother that she couldn't see. We drove up to the stop sign, we both looked both ways, and BOOM! She drove over the curb. I thought we were going to die. I remember this being very traumatic for me. I refused to ever get into the car with her again.
My mom would learn braille, walk with a white cane and cook. She got a Guide Dog named Enid. She took classes at the local college and rode the bus everywhere...she was so brave, she was amazing. She was our Hero.

My entire family has been affected by this dreadful disease including my kids and grandkids, as well as many of my cousins. 
My family wasn't much different than other families in the 1960's. Except my mom was blind and she had this thing called VHL.
We'd never heard of VHL before. No one in our family had it. Looking back over my family tree, I can see the signs. 

The VHL Alliance has always been there to help us navigate our way through the maze of diagnosis. They not only help fund cancer research, they provide patients with information and resources. A lot of us have to advocate for ourselves and family members. We must educate our health care providers...The VHL Alliance gives us tools to help.

I was just a daughter grieving for her mother and wanting to leave her a legacy. Now I am a VHL Warrior, working hard to support VHLA in finding a cure. That is why I am proud to fundraise and give to VHLA. Would you please join me? Donate today!
Suellen xoxo
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