This past week, a special child from Chicago’s own public school community passed away.
Jasper Duinstra was 11 years old and suffered from a rare, fatal children’s disease called Batten, a brutal neurodegenerative disorder that robs children of their ability to walk, talk, think and see before they eventually die.
Parents with children in the Chicago Public Schools in 2009 may remember Jasper and the student initiative on his behalf to raise funds to fight this incurable disease. Started by educators and families along with Jasper’s parents, the Oscar Mayer School in Chicago began what became the Jasper Against Batten effort. Our youngest students lined the school’s halls decorating hundreds of donation cans that families then brought to businesses throughout the city.
Seventeen Chicago schools ultimately joined in the effort, believing that this boy and the message of kids helping other kids were too important to ignore. The fund-raising effort and Jasper’s story were featured in the Sun-Times’ Sunday edition one week, covered by many local news outlets and aired nationally on the CBS Evening News. Jasper’s plight attracted the support of the Chicago Bulls, the then-New Jersey Nets, numerous local businesses and the financial communities in Chicago, New York and Europe.
Jasper Against Batten ultimately raised over a million dollars to fund research for Batten Disease and Chicago school communities learned firsthand that standing up together could actually make a difference.
For me personally, the initiative provided an opportunity to get to know Jasper’s family better. While many parents would have understandably retreated, focusing only on caring for their sick child and family, the Duinstras chose to fight for their son as well as other Batten children who could be helped by future treatments. In this way, Jasper’s older brother became my son’s best friend and their parents became mine.
So many school families developed strong bonds with one another, volunteering their time and walking door-to-door to businesses together. Working to help children is a great unifier. The experience motivated me to become a Local School Council member at our school. And Jasper, his family and all the participating school communities inspired many of us to keep working afterward to help kids in our city.
How fitting that Jasper died less than a day after the passing of the Nobel Prize-winning Holocaust survivor and activist Elie Wiesel. Like Mr. Wiesel, Jasper suffered through something that no human being should ever have endured and inspired others to work toward the goal that nobody should have to experience that suffering again.
Mr. Wiesel once said, “the opposite of love is not hate, it’s indifference.” In 2009, the Oscar Mayer School along with many CPS communities, chose to actively support one of their own. Teachers and parents helped students do something powerful to help other kids. Jasper’s parents chose to fight for many suffering children and we, in Chicago, chose not to look the other way.
This week, as we pay our respects and mourn this special boy, we should remember this initiative and keep an important message alive. That now, more than ever, as so many of our city’s children suffer and face hardships, we need not to turn away.
Whether it’s a fatal disease, the impact of gun violence, or funding for their education, each one of us has a say and a stake in what happens to our children and we can never forget that.
The opposite of love is not hate.
Alana Baum is a CPS parent, former co-chair of Jasper Against Batten and an adjunct professor at Northwestern University’s Feinberg School of Medicine.
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