Dear Henry

Deadly disease took boy, toll on family

Dale Moss

LEXINGTON, Ind. — The hospital bed had already been hauled away. A uniformed man now was at the door, there to reclaim what medical gear remained.

Left behind were music posters, video games, a boom box — the boy's bedroom finally would look like a boy's bedroom. It finally could.

Matthew Lindenmayer had died.

Matthew was 13 when Fanconi's anemia got the best of him after a decade of assault. He had begged to leave the hospital — one of dozens of stays — to wait it out in that bedroom.

Darla Lindenmayer held a picture of late son Matthew, who succumbed in April to Fanconi's anemia.

"Do you know what that means?" Darla Lindenmayer had asked her oldest son.

"He accepted what was happening to him," she said.

It happened on April 22. In their last conversation, Darla Lindenmayer apologized to a pain-wracked Matthew for having insisted that he be put through all sorts of Hail Mary treatments.

"He told me, `Mommy, that's OK. What you did was what was a mom is supposed to do,'" she said.

I had introduced you to Matthew about 18 months earlier, from the family's former home in Jeffersonville. Even then he was cruelly fragile and pretty much bedridden. He also was maturely straight about his situation.

Online information
The Web site dedicated to Matthew Lindenmayer is www.caringbridge.org/in/
matthewlindenmayer

He was resigned never to feel great or to be surprised to feel worse. Matthew had endured any and every complication from the unusual genetic disorder that leads to bone marrow failure. A 1997 transplant had not done the trick. Matthew realized what that could mean.

"I could die any time," he told me without a hint of pity in his voice.

Matthew's birthday is July 3, and his family plans a party. Friends and family will come over for ice cream and cake, and the Lindenmayers will accept gifts to be relayed to children in hospitals. The date must be celebrated annually in similar manner, Darla Lindenmayer said, to reconcile the celebrant being gone.

"There are times I feel his passing has given me a voice," she said.

She expresses it on a Web site that had chronicled Matthew's illness and now serves as a loving tribute. People who have collided with Fanconi's wrath swap stories there and lend support. The site receives a bunch of hits, and the effort now involves time Darla Lindenmayer is unaccustomed to having.

"For 10 years, everything revolved around Matthew," she said. "I'm so used to being so busy with him."

No wonder Darla Lindenmayer is a doula who has been unable to assist a birth in two years. Her husband, Robert Lindenmayer, lost his most recent blue-collar job because he also chose to remain at Matthew's side.

The family is on welfare and has lived since last August in a house owned by Lexington Presbyterian Church.

"We just feel they were meant to be there," pastor Deanna Jobst said. "The church has really tried to step up and witness to them."

One such step is to raise money for Matthew's headstone. For now, his grave is in a nearby family plot marked by a cross made by Matthew's paternal grandfather.

"It's a quiet place to go sit," Robert Lindenmayer said.

Matthew's 7-year-old brother, Spencer, attends Lexington Elementary School across Mulberry Street from their home. Plus there is Cierra, who is 4 and giggles as instinctively as she breathes.

Cierra recently needed oral surgery, and her mother was grateful the preparation did not require medical tests. However unlikely, it is possible that Cierra could have Fanconi's. Spencer does not.

"It's something we'll have to do next year," Darla Lindenmayer said of the tests. "I'm scared to death. I'm not ready to know."

Before his last few miserable months, Matthew had enjoyed a few fairly decent ones. He attended Scottsburg Middle School; was baptized, along with his mother, by Jobst; won the heart of a girl; climbed the tree in the front yard; and somehow talked his parents into letting him drive a bit (with them at his elbow) on the streets of this small, sleepy Scott County town. Due a million breaks, Matthew at least got some.

"He needed to be a normal kid," Darla Lindenmayer said. "I'm glad he got the experience."

Not that any of them misread the situation; each had been burned too often about getting hopes up. The family was aware how commonly Fanconi's prevails, and they knew that Matthew already had survived longer than any child who had received bone marrow from a nonrelative (none of his family was a match).

"We let him live life," his mother said.

Matthew's was a marvelous life. He accomplished much while able to do little.

"He was poked and prodded by everybody in the universe," Jobst said. "But there was never a sense of sorrow. He lived the fullest he could every day."

Dale Moss' column runs Sundays, Wednesdays and Fridays on the Indiana page. You can reach him at (812) 949-4026 or by e-mail at dmoss@courier-journal.com. You can also read his columns at www.courier-journal.com.