Author Archives: Helen Baldwin

Why I Appreciate Diagnosis Day Anniversaries

It’s probably safe to say that these past four months have been a blur for many. It seems that mere blinks ago it was mid-March, the last days of normalcy in untold routines, and the beginning of upheavals that have defied description. Somehow, it’s already…

Service with a Smile and a Waggly Tail

One month after our baby Jeffrey was diagnosed with spinal muscular atrophy, I met Cindy Schaefer on an SMA message board. Her son, BioNews Services columnist and forums director Kevin Schaefer, was diagnosed with type 2 SMA a couple years before that. During…

For Better, for Worse, and Everything in Between

June 7 was my 46th wedding anniversary. My parents reached their 50th anniversary 17 years ago. It is mind-boggling that my husband, Randy, and I are already old enough to ponder our own golden celebration. I have mentioned Randy in almost every column, if not all…

Jeffrey, Clara, and James: A Love Story

Our son Matthew and daughter-in-law Jill handed me a Mother’s Day card in 2015 with instructions to read it aloud. I didn’t pay attention, however, so my deafening squeals left my husband, Randy, perplexed until I blurted out that we were going to be grandparents. A…

May Baby, Special Delivery

I’m a May baby (actually, May senior citizen is a bit more accurate). I love having a May birthday. From wrapping up spring semesters before my birthday way back in college, to getting back to outdoor activities after winter confinement, and to my birthday falling on the heels…

The Coronaviruth

I didn’t intend to write another column about The Virus, at least not right after my last one, but it seemed appropriate to share a surprising revelation from after my baby was diagnosed with the deadliest form of spinal muscular atrophy.

Devastation, Disruption, Despair, and Daffodils

It seems fitting to address the current whammy threatening every single person on the planet. It’s unfortunate that it’s a menacing global health upheaval bringing us together in myriad ways. On the other hand, maybe that’s what it’s taken to counter the relentless political squabbling…

The Time I Would Have Given Back

It’s daylight saving time and we have given back the extra hour we snagged in the fall. I don’t like giving time back. Usually. Ahhh … time. It’s a given that when you’re having fun, time whizzes by. My six weeks studying in Europe…

On This and Every Other Day, I Am Proud to Be Rare

The first Rare Disease Day was celebrated in Europe in 2008. The United States participated the following year, and by 2019 more than 100 countries had joined in to highlight rare diseases. The special acknowledgment falls annually on the last day of February. This year, that’s…

My Introduction to Death and Beyond

My first experience with the death of someone close to me came shortly after my 16th birthday.  A good friend since elementary school, Candy had moved to another state with her parents and younger sister during high school. They returned to Fort Worth, Texas, in early…