Butterfly child
People are capable of more than they think. In my life, no one exemplifies this more than Jamie and Alex Silver.
I met them in college. Alex was one of the first people I met freshman year. His girlfriend, Jamie, whom he started dating when they were teenagers at Horace Mann, a Manhattan private school, went to college a few hours away and would visit him on weekends. I soon found that I connected more with her than I did with many of the people I’d met at school. I probably looked forward to her visits almost as much as he did.
They married in their late twenties and settled into the lives of what many would consider typical of a couple on New York’s Upper East Side: she was a private school teacher, he worked in private equity and then at a hedge fund. After two years of marriage, Jamie got pregnant with their first child.
The day after Jackson was born, I remember being in the hospital waiting room with close friends of theirs, one of whom was a doctor. She said that as soon as she heard Jackson’s diagnosis of Epidermolysis Bullosa, or EB, she nearly died inside.
EB is a group of devastating, painful, disfiguring, and currently incurable blistering disorders that affect children from birth. A child who suffers from EB lacks a critical protein that binds his layers of skin together. Without this protein, when a child moves, his skin slides apart, blisters, and shears off, leading to severe pain, disfigurement, and potentially premature death. (Hence the term “butterfly children,” because the skin is said to be as fragile as a butterfly’s wings.) Because EB affects fewer than 25,000 people in the U.S., there is no FDA funding (making it a so-called “orphan” disease); research relies on private donations.
I had extensive conversations with Jamie as she dealt with the shock of the diagnosis. (Due to the rarity of the disease, it is not tested for in utero.) Why had she and Alex been chosen to be challenged in this way? In a way, EB is a public disease; anyone looking at Jackson could see that he was afflicted with something. Jamie wondered if there was a reason why their struggles would be made visible to all. Alex, perhaps not surprisingly, dealt with it differently. He wanted a plan; he wanted to be able to act, to fix it.
Once Jamie and Alex made the tremendous accommodations in their lives to care for a very sick child (Jamie stopped working full time, among other things), they mobilized. They wanted to use their resources to create an organization solely devoted to research. In 2010, they founded the Jackson Gabriel Silver Foundation (JGSF). I was invited to be a board member.
JGSF is funding multiple research projects, including protein replacement therapy, stem cell therapies, and gene therapies, as well as a clinical research consortium. Alex has testified in front of the Senate and been profiled in Bloomberg Markets in an article about parents who go above and beyond to find cures for their children. The organization has raised over $1 million for EB research and is single-handedly moving the ball forward: What was supposed to take 15 years to develop has taken four.
In October, JGSF’s annual gala, ACTion for Jackson, now in its third year, raised over $370,000 for EB research. Jamie spearheaded an event for more than 400 people at Christie’s in New York, where Alex eloquently spoke not about Jackson, as he had in previous years, but about an EB-afflicted teenager, David Beiss, who spent last year studying in Israel and organized a team to run the Jerusalem Marathon on JGSF’s behalf. David himself ran the last mile and was in a wheelchair for a month afterward as a result of the severe blistering on his feet.
Jackson recently turned five and is blossoming into a great kid. He is precocious and highly verbal, has a quirky sense of humor, and is obsessed with the solar system (see his version at the top). And he is thriving well beyond doctors’ initial expectations in almost all areas.
That said, he attends school with his nurse by his side. Like many children with EB, a simple fall on the playground can cause all of the skin to tear off of Jackson’s palms and knees, leaving him unable to hold a crayon or walk for several days. Swallowing crunchy foods such as pretzels or potato chips can result in a blister or tear in his esophagus, so he self-selects a soft diet. Every day he soaks his bandages of in a bathtub filled with dilute bleach to kill the harmful bacteria on his wounds.
In many ways, ACTion for Jackson is a celebration of how far Jackson has come — but it is also a reminder of how far we have to go. The research is promising, but there is no commercial treatment or cure yet. In the meantime, Jackson talks incessantly about becoming an astronaut. Maybe someday he can fulfill his dreams.
You can donate to the Jackson Gabriel Silver Foundation at jgsf.org.
