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posted: 4/9/2010 12:01 AM

Benefit set to help Batavia musician diagnosed with ALS

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  • Steve Heronemus of Batavia is shown with his family; from left are Matthew, Michelle, Steve, his wife Suzanne, Claire and John. Heronemus is fighting ALS; friends are organizing a benefit concert for him Saturday, April 10 at Batavia Congregational Church.

      Steve Heronemus of Batavia is shown with his family; from left are Matthew, Michelle, Steve, his wife Suzanne, Claire and John. Heronemus is fighting ALS; friends are organizing a benefit concert for him Saturday, April 10 at Batavia Congregational Church.
    Courtesy Bethlehem Lutheran Church

 
 

A proud father and doting dad, Steve Heronemus has always been in the audience at school concerts and plays, or on the sidelines at sporting events, supporting his four kids, Michelle, John, Claire and Matthew.

Never one to shy away from a challenge, he has taken leadership positions in both music and theater parent groups.

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Now he is facing the greatest challenge of his life.

In November 2003, Steve Heronemus, an accomplished musician on a variety of instruments, sensed something was wrong when he attempted to play a familiar Debussy piece on the piano.

"My fingers simply would not respond as normal, said Heronemus. "My brain was racing ahead far more quickly than my fingers wanted to go. Next, I developed muscle twitches in my shoulders and arms that would not go away, followed by cramping and weakness."

This impairment was especially difficult for Heronemus whose greatest musical gift was French horn.

"I couldn't keep my fingers on the valve keys or keep the keys held down for any length of time due to the misshapenness and weakness in my left hand," he said. "This was a complete shattering of my being. In many ways I think and feel not through, but in, music. For over 35 years, playing horn has been my emotional voice, the best way for me to express who I am to the rest of the world."

It would take two years and visits to five specialists before a diagnosis would be made. During that time, Heronemus didn't take it easy. He led a successful referendum campaign to make the necessary changes in our schools.

In 2005, he was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease or ALS.

"For people who are progressing slowly like me, this lengthy diagnostic process is quite common since ALS must be diagnosed by eliminating all other possibilities," he added. "ALS is really a category of diseases with similar symptoms. We have no idea how many different ALS diseases there are, how to identify most of the individual diseases or what causes them.

"This uncertainty, along with the fact that only about 17,000 Americans are living with ALS at any given time, discourages research investments being made by commercial drug manufacturers. About 80 percent of ALS patients die within two to five years while 10 percent survive 10 years or more."

Such statistics were hard to hear, but Heronemus didn't let the prognosis get him down. He and his wife, Suzanne, started doing their own research on ALS.

He found a late 18th century natural horn, a horn without valves and with the help of his family was able to purchase it. His sister found music for the natural horn and once again, he and his daughter Michelle were able to play together.

His church, Bethlehem Lutheran in St. Charles, rallied around him, holding a fundraiser that packed the Batavia High School gym, with a performance by popular Christian artist Peder Eider, who donated his time and talent for the event

K. Hollis Jewelry in Batavia created a special ALS bracelet with $5 off each purchase going to the Les Turner ALS Foundation.

On Saturday, April 10, friend and fellow church member, Dori Erwin Collins will share her musical talent with a recital of art songs, opera and musical theater selections assisted by soprano, Emily Shankman. Dale Morgan will read from the poetry of Steve Heronemus. Accompaniment will be provided by William Buhr, pianist, and the Tim Wilsey Trio. The event takes place at the Congregational Church of Batavia. Proceeds will be used to cover costs not covered by insurance.

Steve Heronemus is now on a fast course to do what he can to raise awareness and support for ALS research, not for himself but for others who might deal with this disease in the future. He and his wife have organized a Walk For Life team for the Les Turner ALS Foundation and are encouraging others to join at www.alswalk4life.org/believewithsteve.

Even though Steve Heronemus needs assistance with every day tasks, his spirits are good.

"Every day I get to open my eyes and see my loved ones," he said. "That is a gift I will not waste on feeling sorry for myself or worrying about worthless trivialities."

Although he is now wheelchair bound, Steve Heronemus was at the last choir concert, supporting his daughter, Claire, and enjoying all the wonderful music.

"Music brings a rush of oxygen to my life and blows the clouds away, revealing all the beauty, joy and wonderment of creation for me to behold," he said. "I might be able to survive without music, but only with music can I truly live.

If you go

What: Breathe the Lovely, a recital by Dori Erwin Collins

When: 7:30 p.m. Saturday, April 10

Where: Batavia Congregational Church, 21 S. Batavia Ave., Batavia

Tickets: $75

More info: For tickets or to make a donation to the Steve Heronemus benefit fund, administered by Bethlehem Lutheran, call (630) 584-6377

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