My wife and I could’ve never guessed a blood test would send our world crashing into a fatal diagnosis for our sweet 2-year-old.
Andrew has Duchenne muscular dystrophy, a rare, degenerative genetic condition that affects 1 in every 5,000 babies, predominantly boys. Duchenne results in wheelchair use by preteen years and death by early adulthood.
We’d lived his first two years completely unaware of his ticking prognosis.
I don’t want another family to endure the same life-altering recalibration years after their sons are born. They shouldn’t have to wait, and Gov. J.B. Pritzker can make that a reality. Late last month, both houses of the General Assembly unanimously passed Senate Bill 2658, which will add Duchenne to the state’s newborn screening requirements. Sen. Julie Morrison and a group of bipartisan lawmakers led the way.
Now, it’s headed to the governor’s desk. This law would give all Illinois babies with Duchenne a chance at active lives.
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We were incredibly fortunate to receive Andrew’s diagnosis when we did. The average Duchenne patient is diagnosed at 5 years old. Prioritizing early detection for Duchenne will help families make informed decisions and pursue potentially life-saving treatment from the start.
Andrew’s story since diagnosis shows why newborn screening and early detection is such an urgent priority. In 2019, he started a clinical trial for a new gene therapy. Just a few weeks later, we noticed transformational improvements in Andrew’s strength, stamina, mobility and energy levels.
We got so lucky with timing. Andrew was of age to participate in the trial for the gene therapy, which is now available for boys ages 4 and 5. The FDA is reviewing expanded eligibility.
Not testing for Duchenne at birth means it’s already too late for most families to pursue treatments that will give their boys longer, more mobile lives.
I won’t stop pushing until all boys experience the same outlook as my Andrew, now 9.
Nate Plasman, Lombard
A tribute to Dad
My dad, long gone now, could fix anything. And to save money, he could reinvent the wheel, so to speak, as in the time he built a small motorized cement mixer that he knew he’d use only once. It worked like a charm, and in no time, a lovely little sidewalk replaced the path next to our house.
Many times, as my father peered under the hood of his car, a group of neighborhood little boys would stand like sentinels, waiting for my dad to hand them a tool of some kind. And he always did.
I watched with amusement as Tommy’s eyes adored the gleaming silver wrench my father handed him. “Here, hold this for me,” said my dad. Before long, each boy had a different type of tool which the kid dutifully handed over at the hilarious bellowing of my dad.
I greatly suspect that several of those tools weren’t even necessary to fix the car, but my dad definitely “used” all of them, and each little boy was, for the moment, ecstatic.
Kathleen Melia, Niles
Misuse of the word ‘genocide’
As newspaper readers surely recognize, words matter. As a father, one of my deepest hopes is that my daughter understands her role in making this world a better place and that she will learn to recognize the dangers of weaponizing language.
Currently, my concern is piqued by the casual use of the word “genocide” to describe the ongoing conflict in the Middle East. This misuse of a profoundly significant term not only distorts reality but also undermines the gravity of true genocides like the Holocaust.
The Holocaust stands as a harrowing example of genocide: a systematic, state-sponsored persecution and extermination of six million Jews, alongside millions of others, by the Nazi regime. This atrocity was characterized by its sheer scale, intent and meticulous execution.
The use of the word “genocide” is enshrined in the 1948 Convention on the Prevention and Punishment of the Crime of Genocide, which defines it as acts committed with intent to destroy, in whole or in part, a national, ethnic, racial, or religious group.
In contrast, the Israeli-Palestinian conflict, however tragic and complex, does not fit this definition. The conflict involves territorial disputes, security concerns and political maneuvering. The violence, though horrific, does not arise from an orchestrated intent to annihilate an entire people. To equate these circumstances with genocide negates historical atrocities and misuses a term that carries a somber meaning.
The casual use of “genocide” in this context does a disservice not only to the victims of the Holocaust but also to other instances of true genocide, such as the Rwandan and the Armenian genocides. These events share the hallmark of deliberate and systematic destruction of groups.
To address this issue, we must commit to responsible communication. Here are steps that individuals and communities can take: Educate ourselves and others; promote media literacy; engage in constructive dialogue; support peace initiatives; hold media and public figures accountable.
By committing to precise and thoughtful language, we honor the memory of those who have suffered actual genocides and contribute to productive discourse. In this way, we pave the way for a better world for our children and future generations.
Laurence Bolotin, board member, American Jewish Committee
How to beat inflation
Want to beat inflation? It isn’t so hard to do, at least for me. I completely eliminated dining out in any kind of restaurant or fast-food joint. I never go to a bar, tavern, club or saloon just to pay at least five times the price of a beer at home. Hard liquor is even costlier.
While I completely understand that prices eventually rise, I refuse to purchase anything that I believe is price-gouging. Let it sit on their shelves. Although I could, I haven’t bought a new car in 20 years because of the prices being out of line.
Even my clothes are worn longer. So when I hear people complain about the high cost of living, I hit them with easy logical cutbacks, and you know what? They really work and, actually, faster than I thought. Remember that you can’t complain about money if you are spending it on anything I stated.
Mike Zaczek, Orland Park
