Ride For Life: Twins keep dad-to-be with ALS going

The television blares day and night in the Lehmann living room. Usually, a muscular action hero fills the screen, triumphing over evil and impossible odds.

In the room's center, Trevor Lehmann, once a hard-charging community leader, lies nearly immobile in a hospital bed surrounded by syringes and cartons of medications. Watching TV--action flicks in particular--is his escape.

When Lehmann, 37, groans in distress, his wife, Jen, moves awkwardly to his side with surprising speed for someone six months pregnant with twins.

With little fuss--sometimes with the help of a part-time hospice nurse--she administers painkillers, treats stubborn bedsores, helps him onto a bedpan, suctions mucus from his lungs or simply offers comfort.

"It's the babies that keep me going," says Jen Lehmann, 37, who in recent months has fought chronic exhaustion and weight loss. "Before he got sick, Trevor was such a robust, active man.

"He hates what he's become."

Before January 2004, when doctors diagnosed amyotrophic lateral sclerosis, a fatal neurological disorder known as Lou Gehrig's disease, Lehmann was leading a blessed life. A successful Realtor and co-owner of a Century 21 office in Wheeling, he was elected to the Wheeling village board in 1997, focusing his expertise and his energy on improving his hometown.

Wheeling is full of tangible signs of Lehmann's work, from new residential subdivisions to thriving business districts and parks. During his two terms as a trustee, he helped simplify Wheeling's bureaucracy to make it easier for people to do business there. He helped establish Friendship Park on the village's east side and last year was key in snagging the agreement for the forthcoming Westin-North Shore hotel, fellow Trustee Pat Horcher said.

The board's approval of the hotel last month was bittersweet, village spokesman James Lang said. "It was Trevor's dream for Wheeling to be like its North Shore neighbors. ... He wasn't satisfied with the status quo. Now, the [crowning glory] of his vision--having a four-star hotel in Wheeling--will come to pass, and he won't be around to see it."

Last January, doctors gave Lehmann three years to live. But the prognosis was optimistic.

Lehmann was so confident he would live long enough to see his children born--and perhaps even see a cure for the disease--that he persuaded his wife to begin in-vitro fertilization, an option they were exploring because they had been unable to have a baby.

`Let's get this family going'

"My first response was, `What are we going to do?'" Jen Lehmann said. "Trevor's reply was, `Let's get this family going.' He didn't think he was going to die."

In an e-mail in late March, Lehmann informed friends and business colleagues of his illness. He wrote that he was going public to put a face on the terrifying disorder.

But the disease progressed at a ferocious pace, leaving Lehmann unable to speak, eat or move, apart from some mobility in his head and left arm. In September, he moved to the hospital bed in the living room.

Lehmann uses his limited arm motion to operate the TV remote and to tug his wife down to the bed to cuddle, Jen Lehmann said. Other times, they lie together in bed and cry, grieving for the life they once shared.

Lehmann is not expected to live through the month. A respirator could possibly prolong his life, but he refuses to use one, his wife said. Clipped to their refrigerator is a bright orange document signed by Lehmann with large block letters reading "Do Not Resuscitate."

In the U.S., more than 5,600 people each year learn they have ALS, and about 30,000 people now live with the disease, according to the Les Turner ALS Foundation in Skokie. The disease, for which there is no treatment or cure, steadily attacks the central nervous system, robbing its victims of control over simple functions such as eating, walking and speaking, while leaving the intellect intact.

Soon after Lehmann's diagnosis, the couple contacted the ALS Foundation. "They were willing to talk publicly about what they were going through so their experiences might help others and raise awareness about the disease," said foundation director Wendy Abrams.

Residents and town leaders have been supportive. On May 18, the village renamed a fountain in Friendship Park after Lehmann. A week later, friends and family held a fundraiser at Palwaukee Municipal Airport. Every Wheeling restaurant along Milwaukee Avenue donated food, village Trustee Dean Argiris said.

Organizers had hoped to sell 500 tickets at $50 each. They sold 826 tickets, and raised $80,000 to help the Lehmanns with medical expenses, Argiris said.

The money allowed the couple to purchase a van equipped with a wheelchair lift, Argiris said.

The Lehmanns also have helped raise money for others with the disease. They went to Washington in May to lobby lawmakers for research money.

In June, they helped organize a donation drive, which raised more than $6,000 for the Skokie-based foundation, Abrams said.

In July, the foundation awarded the couple its Humanitarians of the Year Award.

Treatment in China

By September, distressed by Lehmann's rapidly deteriorating condition, the couple used money raised on his behalf to fly to Beijing. There, in a controversial procedure banned in the U.S., doctors injected fetal stem cells into Lehmann's brain to try to regenerate or replace neurons destroyed by ALS. After returning from the $18,000 trip, he reported some improvement in his ability to swallow, Jen Lehmann said. But his condition quickly worsened.

In early December, they borrowed a computer that helps Lehmann with limited communication. By moving his head and hitting a button, he can move a cursor on the computer screen to spell out a word or choose from a series of pre-programmed commands--among them "I want a hug" and "I have to go to the bathroom."

When he first got the computer, he repeatedly spelled out an obscenity, both to express his frustrations and because it amused him, his wife said.

But on Christmas Eve night he spelled out "Tyler Ross," the name he chose for the son they are expecting in late March or early April. Their daughter will be named Grace Ann.

During the past year, Jen Lehmann has compiled scrapbooks of notes, newspaper articles and photographs documenting her husband's career as a trustee and his battle with ALS.

When their children are old enough, she plans to show them the residential subdivisions, parks and business districts that he was instrumental in bringing to Wheeling. She'll tell them about their father's sense of humor and his passion for his work and his community.

"He's more content lately, I think, because he has come to terms with his own death," Jen Lehmann said. "He's my best friend, and I can't imagine life without him, but it would be selfish of me to try to hold onto him longer because it would be for me, not him."