Two related stories in this week’s Standard by our science correspondent, Dr. Miryam Wahrman, beautifully told and scientifically complex, tell the heartbreaking story of Benny Landsman, not quite 1 1/2, and his little brother Josh, about 5 months old.
Both the brothers have Canavans disease; unless science stops and magic takes over, the boys are likely to die before they can turn 10.
Their grandmothers have devoted themselves to their care, and to raising money to fund the research that probably will not cure them but probably could prolong and comfort their lives.
There are many lessons to all of us in this story, should we be able to dry our eyes and still our hearts enough to learn them.
To be clear, none of those lessons is theological. I have no idea what people whose minds go in that direction make of this story, and I do not want to know.
This story is about human love and perseverance and the ability to keep going; about the ability to take love wherever you find it and make more of it and keep going; about the ability to find hope in odd places and make more of it and keep going.
It is also about science’s failures, and its successes, and its future.
The boys’ parents maybe could have been diagnosed as carriers, had the tests been more available and the need for both parents to take them been more clear. It is vital that we as a community stress the need for people who are thinking of becoming parents to test themselves, and to do it more than once, because as scientific knowledge grows the tests become ever more precise. Do not assume you know what any panel of tests will show. Take it.
Fund science. That’s how we fight terrible illnesses like these. That’s how we keep children from dying. Fund science. Value science. Teach our children about the value of analytic thought, of never taking anything for granted, of challenging assumptions, of experimenting and experimenting and experimenting.
Value love. The boys’ parents and grandparents are not giving in despair, although who could blame them if they did? They are loving Bennie and Josh. They are giving them the experiences that all children deserve, no matter what we assume about their life expectancy. They are honoring their lives, listening to their laughs, playing with them, cuddling them, loving them. That matters.
Help the family. Contribute to its GoFundMe campaign. It will help the family afford the experimental drugs that will keep their sons alive, at least for now. Every little bit adds up, and every little bit counts. That matters.
As this new year begins, as we leave perhaps the most contentious year that most of us can remember, as we head toward a year that we fervently hope will be better, less partisan, less crude, less snarlingly ugly, we understand that we also are moving toward more light, and we hope that we also are moving toward hope.
Cherish hope. Nourish hope. Fund hope. Love hope. It matters.
We at the Jewish Standard wish all of our readers a new year of hope and love and peace.