Update: For Lebanon family, caring for two daughters with a rare illness is a daily loving struggle

LEBANON, Ohio - They didn’t win the Internet contest for the wheelchair-accessible van. Didn’t even make the cut for the semifinals. They bump along financially--no money in the bank--with two young daughters in the grip of a rare genetic disease with the grimmest prognosis. Even the Make-A-Wish trip last month was a trial. The whole way back from Florida, Layla screamed.

“Some days, it’s just about unbearable. But we just have to do it,” said Christina Martin, sitting with her husband Bradley Martin and their family in a tiny duplex on a cul-de-sac just off State Route 48 in Lebanon.

Bradley echoed his wife.

“Like she said, we just do it. You can’t dodge all the hard stuff in your life.”

A mysterious illness & few answers

Christina and Bradley Martin were high school sweethearts who parted, married other people, had a daughter each then reunited and married. They had Layla in 2011, daughter Angel in 2012, son Bradley Jr. in October.

Not long after her first birthday, Layla’s progress stopped and went into reverse. She stopped walking, and her feet turned in. She stopped talking. Her eyes crossed. She howled through nights of pain. Doctors said Layla’s brain was shrinking, but they didn’t know the reasons.

Not long after Angel turned one, she, too, developed the same heart-stopping course of mysterious symptoms. Through round after round of specialist visits, hospital stays, emergency care, no answers emerged.

Earlier this year, the Martins entered Layla into an annual contest by the National Mobility Equipment Dealers Association, a nonprofit group that donates four U.S.-built wheelchair-accessible vans as prizes. Christina wrote the appeal about the strange affliction that had come upon Layla.

At the same time, doctors suggested another test for Layla and Angel. The result confirmed that the girls suffer from infantile neuroaxonal dystrophy, a genetic disease so rare that Layla and Angel apparently are the only Ohioans with the condition. Life expectancy is between five and 10 years.

The disease is progressing more slowly in Angel than it did in Layla at the same age, but Christina must watch her constantly. At age two, Angel has little control over her body, and sometimes, she can just tumble over and smack her head on the floor.

With dread, the Martins also submitted their infant son for the genetic testing. For six weeks, the Martins worried. Then came the news: Bradley Jr. did not have the disease or carry the gene.

“Of course,” Christina said, “I cried.”

A journey of highs and lows

The Martins gave permission to send medical records for Layla and Angel to Oregon Health and Sciences University, the U.S. research point in an international consortium studying infantile neuroaxonal dystrophy. Christina said the Portland facility linked her up with a Facebook page for other families with children who have the disease.

Through their church, family and friends, the Martins drummed up votes for the online van contest. There were more than 1,400 contestants, and the Martins did not have enough votes of the 4 million cast to make the semifinals. The winners were announced in late May.

By her third birthday, Layla was failing fast. The doctors added heavy-duty medications usually reserved for gravely ill adults – the nerve treatment Neurontin, the anti-seizure drug Ativan — and the Martins brought in StarShine Hospice for children. Through the organization, the Martins applied to the Make-A-Wish Foundation, which makes dreams come true for terminally ill children and their families.

“They told us that normally it takes six to eight weeks for Make-A-Wish to make a decision,” Christina said. “We heard in 30 days.”

They chose Florida. The foundation paid for the Martins to rent a passenger van to accommodate Layla’s wheelchair, and the whole family drove to the Give Kids The World resort near Orlando, designed for sick and handicapped children. Christina’s daughter, Brianna, 13, who cares for her little sisters, had soaped the van’s windows with the words, “Layla’s Make-A-Wish Trip.”

When the family stopped for gas or food, strangers asked to meet Layla as she sat in her wheelchair in the van.

“At this one place, they threw $50 bills in her lap,” Christina said, laughing softly.

At the resort, cartoon characters came by the Martins’ room every night and tucked the children into bed.

“Layla loved it,” Christina said. “She was smiling. She looked around at everything. She loves music, so she heard all the music.”

Christina’s mother Marie Bentley and her husband traveled with the Martins, and the memory of the resort stay brought tears.

“Every time we came back from somewhere, the folks at that place said, ‘Welcome home.’ It was beautiful.”

The Martins had a great week. But on the drive home, Layla’s pain made her cry out “just about the whole way,” Christina said.

A poor prognosis for Layla

Last week, Christina took Layla to visit her doctors for hard news. The child is dying. They recommended putting her into a more formal setting for care. Christina said thank you and brought Layla home, to the tiny duplex on a cul-de-sac in Lebanon.

Anonymous donors at the Martins’s church provided Bradley, a landscaper by trade, with a used truck and tools; he has created his own company, Lawns 4 Layla. He said he’s gotten some work--not enough--but he hopes that more will come by word of mouth.

On a June Saturday, morning sun slid in the front door of the tiny duplex as the Martins talked about their children. A timer went off, and Christina lifted Layla from her strap-in chair and stretched her on the floor. Brianna distracted her sister with toys while Christina uncoiled the tube to Layla’s stomach port and poured in liquid nutrition.

Sitting on the floor, Angel watched the process, then bent over Layla’s bare, turned-in foot. Christina teased, “Now, Angel, don’t bite,” and Angel sat back up to laugh at her mother.

On a loveseat next to his father, Bradley Jr. fell asleep.

Connect with Anne Saker on Twitter: @apsaker.

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