Letters From the VOC Family Network

Vivian,

Your organization has meant so much to us. Thanks to VOC we are actually meeting a family tomorrow in New Jersey who’s daughter has the same VERY rare eye condition as our son. We were connected to them in a round about way....
Your team originally connected us to Dr. Drack from Iowa. She was the one who recommended we have our son use Molecular Vision Lab to figure out the genetic basis for his impairment. Then, the director of that lab kindly connected us with another organization in New York who eventually connected us with this family. We’ve been speaking to them regularly over the last year and are finally meeting them in person tomorrow. All ultimately thanks to VOC!
This family’s daughter is the same age as our son and it’s been such a relief to be able to compare notes, milestones, trials and tribulations. Unlike other more common health conditions, we are so fortunate to meet another family with a child that has the exact same issue. It was truly like finding a needle in a haystack.
We are forever grateful for VOC and will continue to support you during this difficult time.
In the meantime, our son has blown away all our expectations. Fortunately, his vision, while impaired, is very functional and other than glasses and a bit of mild nystagmus you’d never know. He’s exceeding all milestones and is otherwise totally healthy and strong. He’s also whip smart and has the best personality — bringing us so much joy every day.

Please send our best to the rest of your clan. I am confident we will get through this horrific time better than ever. With all the money plowing into life sciences innovation, once COVID is behind us I think the focus will quickly return to other conditions.

- Stephen