Some serious heroes: Randy, Caroline, Natanel and Eden Gold.
Did you know that the Jewish Federations of North America sponsor a contest every year to elect a Jewish Community Hero? Maybe you didn’t. After all, it doesn’t usually make the national news. But here at Kveller, we’re super proud of the newly-announced 2011 Jewish Community Hero, Randy Gold.
We were introduced to Randy and his wife Caroline a few months back when they told us the story of their family. They have two children, and their daughter Eden suffers from a terrible genetic disease called Mucolipidosis Type IV, or ML4. Eden has a limited life expectancy, and most affected children are not able to talk or walk, and their mental capacity maxes out around 18 months. If you read Randy and Caroline’s full story here, you’ll get all of the details, but I’ll summarize for you.
Basically, Randy and Caroline were both tested for Jewish Genetic Diseases. They trusted their doctors and assumed they were tested for everything that they needed to be tested for. As it turns out, they were tested for only 2 and 8 diseases, respectively, of the 16 that had been discovered at the time. (Now there are 19.) Their daughter Eden was born with a disease for which they hadn’t been tested.
Rather than breaking down and giving up, or grieving, Randy and Caroline took action. They see themselves as having a responsibility, a sacred task–to solve the problem of Jewish genetic diseases. They founded an organization called Jewish Gene Screen in partnership with The Marcus Foundation, and work to educate doctors, rabbis, cantors, educators, and young couples about Jewish genetic diseases. Randy explains their passion best in his own words:
Through our tragedy, we can save lives. This is a legacy that Caroline and I never thought we would leave. But if our legacy is helping to change the landscape of Jewish genetic diseases, then I think Eden has no more noble a life.
We’re really proud of Randy, Caroline, and the whole family. Mazel tov on your great accomplishment, and we wish you even more success in the future.
Now all you Kvellers out there–get tested, and tell your friends to get tested too!
Kveller has lots of information on Jewish Genetic Diseases that you can find here. Additionally, you can log onto www.jewishgenescreen.org or www.victorcenters.org, print the list of 19 known preventable diseases, take the list to your doctor and ask to be tested for all of them. If the doctor has any questions, he or she should call The Victor Centers’ information line.