Ride For Life: Zane Shaw: Anatomy of a disease

Each day, time stands still for Zane Shaw.

Not so long ago, a big, strapping drummer in the Massillon Tiger Swing Band, Zane now is able only to listen to music rather than make it, his life limited to the narrow confines of a hospital bed in his home.

Amyotrophic lateral sclerosis – or Lou Gehrig’s disease as it’s more commonly known – has stolen the young man’s life. It’s robbed him of the use of his legs and arms, it’s taken his speech and breath.

It’s left him with a single ability – raising his thumbs.

Zane now is giving a thumbs up to the possibility of an experimental treatment that may reverse ALS’s crippling effects. They’ve read of two area men – a 36-year-old in Medina and a 40-year-old former Belmont County resident – who reportedly have seen improvement since traveling to Beijing for a procedure in which ALS patients and paraplegics are injected with nerve cells harvested from the brains of aborted fetuses.

Dr. Huang Hongyun, a neurosurgeon who trained at Rutgers University, uses a long needle to insert olfactory ensheathing cells to treat neurological damage.

Zane’s family first heard of the procedure late last year, and Pam Shaw’s mother-in-law has been in e-mail contact with a former Belmont County man’s father who reports “remarkable progress,” Pam said. She hopes to hear a Medina man who underwent the procedure speak at the March 13 meeting of the Stark County ALS support group.

“I wasn’t skeptical,” she said. “I figured we have nothing to lose.” Zane, she said, was excited at the prospect.

One hitch in the Shaw family’s hope, however.

The procedure costs $20,000. Not to mention that a Chinese herb recommended for use both before and after the surgery costs $350 an additional month.

“I was like, ‘There’s no way, we don’t have that,’” said Pam, who cares for Zane full-time with the assistance of Medicare.

ALS already has claimed the lives of Zane’s uncle, grandfather, father and older brother, but Pam feels Zane’s case is different.

“All along I’ve had this feeling that there’s a bigger reason he’s going through this,” she said. “He didn’t deteriorate as quickly as the others. I feel there’s some other reason behind it all. I’m not giving up on him.”

There have been small inspirations along the way.

She believes the herb and vitamin regimen she began for Zane around the time of his May graduation from WHS has allowed him to gain 50 pounds when “weight gain is almost unheard in ALS patients,” she said. “His nurses are amazed at his great muscle tone.”

“I say he’s maintaining right now,” she said.

It all works out

Just when his home health care aide and nurse visits were about to be terminated by Medicare because “they said he was in too good of shape,” Pam said, two sores appeared on Zane’s body, allowing the home health care to continue.

One of those aides discovered the Shaws had an electrical problem, leading him to offer free repairs, leading to the discovery of frayed fixture wires.

“The whole place could have gone up,” Pam said.

It’s no wonder, she said, “stress is my first, last and middle name. I told my mother and mother-in-law, ‘Don’t even think about getting sick. I need your help too much.’ I’m hanging on by a thread.”

If it means China ...

To move her son from his present purgatory back to a physical life, Pam Shaw will do “whatever it takes,” she said, even if that means taking him around the world.

“I know he’s not the only one out there,” she said, “but maybe he’s one of the youngest.”

She has the application for the Chinese procedure ready, even though she’s been told the waiting list is a year long and the money is nowhere in sight.

“Whatever’s meant to be will work out somehow,” she said. “If it’s meant to be, the money will be there somehow.”

Still, she was surprised when she got calls from two Washington High students.

“Out of the blue they called and said they want to do some fund-raisers for Zane,” Pam Shaw said. “I was shocked to think they still want to do something for him.”

FCCLA members have been collecting change during lunch mods at the school. In just one week they raised $240, reported vice president Tiffany Martin, who remembers Zane from Swing Band.

She feels for him

Fellow FCCLA member Jesse Bloom has never met Zane, but the red-haired junior is on fire for some fund-raising on the family’s behalf.

“When I heard about it,” he said, “I thought, ‘Wow, I feel for that kid.’ And I’m the kind of person who thinks if I was him I’d want a kid like me to do something. You have to switch shoes and put yourself in his place. From everything I’ve heard, he’s a really good kid.”

“Jesse’s a gung ho kind of kid,” Pam said. “He’s like, ‘We can do this!’ Zane got really excited and hopeful, so I thought, OK, we’ll do what we can and go from there.”

The procedure has drawn its critics for the use of tissue from aborted fetuses, but Pam sees it as dealing in reality.

“These fetuses are going to be aborted no matter what,” she said, “and meanwhile people are dropping like flies from this disease and given no hope. Without coming out and saying it, they basically tell you, ‘Go home and get ready to die.’ This way at least something good can come out of something bad.”

Still it’s a start

Although $20,000 may not be the final tally from change collection and a planned bowling fund-raiser, FCCLA members are undeterred. They’re taping a segment for Channel 50 in Zane’s home to raise awareness of his needs, which also includes things such as baby wipes, tissues, apple juice and sinus pills, Martin said. They called Montel Williams’ daughter in Glenmoor hoping to book a segment on Montel’s show.

“I’d do anything,” Bloom said. “I think his mom would be the happiest person in the world if we could (raise enough money). It’s an amazing thing someone could go through as much as she has and still have as much heart as she does. If I can put a smile on her face, I’ve done my job.”

It’s day by day

Meanwhile, Pam Shaw doesn’t dare look too far into the future.

“I take it one day at a time and keep praying that the right thing will happen,” she said. “I of all people know how quickly things can change.”

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Donations may be made to the Zane Shaw Fund at Charter One Bank, 2200 Wales Ave. N.W., Jackson Township.