JScreen educates doctors, rabbis, and young couples. They lobby insurance companies and laboratories to create a new standard of screening for Jewish genetic diseases.
“Our family story is one of hope,” Randy continues. “When you see Eden’s face light up or she giggles, you know how special she is. There is not another eight-year-old in the world who loves going to shul as much as she does. When she and I go together on Shabbos mornings, we have the added gift of great quality time together.”
Although she doesn’t speak, Eden produces a few sounds and uses her own version of sign language to communicate her wants and needs. She has a great sense of humor and inspires her parents and siblings every day. An incredibly hard worker, she endures eight hours of therapy a day while embracing each opportunity to do new things.
Eden’s siblings, nine-year-old Natanel and four-year-old Shai Emunah, adore her, even sleeping in the same bed at night because they love being with her. They take Eden’s condition in stride; it’s part of their everyday life. Natanel will introduce a new friend to Eden by saying, “This is my sister, Eden. She has a disease.” And then they keep walking, as if it’s no big deal. Now that Natanel is old enough to understand the situation, he sometimes sets up lemonade stands with friends, donating the proceeds towards finding a cure for ML4.
Eden’s condition is physically and emotionally demanding. She can’t feed or dress herself, go to the bathroom, or communicate in the standard fashion.
“Sometimes I look at other eight-year-old children,” Randy says, “and then I look at Eden. I know she will never go to college or enjoy the beauty of enduring relationships.”
Randy and Caroline think about Eden all the time, but don’t dwell on her prognosis. Focusing on what they can do for her, they try to give her every possibility to learn and grow. They also take an active role in funding medical research for ML4.
Everyone, from time to time, deals with some type of difficulty, whether it’s health, family, financial, or a combination. Often people tell the Golds that they appreciate the incredible organization that is JScreen, and the transcendental message that emerges in breathtaking beauty. The message is subliminal, a banner of hope and courage in the face of overwhelming adversity. This family, dealt such a difficult blow, deals with it in such an impactful way. It is impossible to watch and not marvel at how they give others strength to deal with their own overpowering issues.
“If people are empowered to deal with their trials and tribulations,” Randy remarks, “that inspires me.”
A devastating diagnosis turned Randy and Caroline Gold’s world upside down. Yet from the darkness emerges bright light, as they meet their challenge with love, devotion, and courage.
“Eden saves lives every single day,” Randy offers. “And if that is what she is here to do, there is no more noble a life than that.”