Lebanon girl, 4, dies after sister succumbs to same rare disease
LEBANON - As the sun set Sunday over East Ridge Road, a man put out a smoking barbecue grill. A woman took her dog inside her house. In a rental duplex at the end of the street, a little boy got into his pajamas. And Angel Martin still breathed.
Her chest quailed at the effort. Her mother cradled her limp, pale body on the big brown sectional sofa, stroking her forehead, running fingers through Angel’s long hair, holding her 4-year-old’s foot, green polish on toes that had curled from the battle.
For Angel’s last night, Christina and Bradley Martin summoned family and their pastor to their home, the rental duplex. The crowd overflowed from the living room into the kitchen, so Bradley brought in outdoor chairs. When Angel’s little brother, 3 years old and barefoot, stormed in and crawled into an adult’s lap, the room bubbled with laughter. Then everyone sank into quiet, listening to Angel breathe.
Over the past five years, the Martins have lived a peculiar medical mystery. Between April 2011 and April 2012, they had two daughters, Layla Jean and Angel Rae – “my Irish twins,” Christina joked on Facebook. For their first years, the girls bloomed with health. Then without apparent reason, they regressed, systems failing in bizarre and heartbreaking succession: losing the ability to walk, talk, stand, sit. They spent nights screaming in pain.
Doctors at Cincinnati Children’s Hospital Medical Center were perplexed until 2014, when one doctor found a genetic test for infantile neuroaxonal dystrophy, an ultra-rare disorder in which iron floods the brain until it short-circuits. Life expectancy is five to 10 years. An international consortium of teaching hospitals is studying a group of rare diseases such as infantile neuroaxonal dystrophy. The leading U.S. facility is Oregon Health and Sciences University in Portland, Oregon.
Christina and Bradley Martin learned that they each carried the recessive gene for the disease and passed it on to their daughters. Infantile neuroaxonal dystrophy has an incidence of less one case out of every 1 million people. The Martin girls are believed to be the only people in Ohio afflicted.
The girls captivated their congregation, the Village Community Church in South Lebanon, which has devoted thousands of volunteer hours to the Martins, often to baby-sit Bradley Jr., who did not inherit the gene for the disease. Church members chipped in to help Bradley Martin start a landscaping business, Lawns 4 Layla.
Layla died Aug. 29, at age 4, in her mother’s arms at the rental duplex.
The nine months since have been a long, slow slide for Angel. She was often asleep and almost always on an oxygen assist. But happy moments arose. In February, she wore a big, flouncy pink dress to the “A Night to Shine” dance at Christ’s Church in Mason. She turned on a megawatt smile, eyes lit up with star-like lashes, and people melted at the sight of her. The family threw her a fourth birthday party with a pink polka-dot Minnie Mouse theme.
On May 4, Christina and Bradley Martins appeared at The Enquirer’s Cincy StoryTellers event at The Phoenix to recount their journey of caring for Layla and Angel, of drafting bucket lists for their toddlers and taking them to Disney World.
This month, Angel failed quickly. Her lungs filled. By sunset Sunday, Christina and Bradley cuddled with Angel on the couch. Christina’s mother Marie Bentley and her husband Martin, who often cared for Angel, stood in the kitchen and held each other, weeping.
Bradley Jr., in his pajamas and sitting on the adult friend’s lap, put his hands behind his head and fought sleep. His father laughed. “Oh, there he goes. When he puts his hands like that, he’s ready to go,” and suddenly, the little boy surrendered.
As Angel breathed in raspy gulps, nurses from Cincinnati Children's Star Shine Hospice brought out a craft project. One presented a special paper to capture prints from Angel’s hand and feet. One nurse took a piece of clay, worked it soft then reached for Bradley Jr.’s left hand. Gently, without waking the boy, the nurse applied his little thumb into the clay, to collect his print. Then she went to Angel’s side and pressed her thumb into the clay.
Through the night, a fat moon just a shade past full rode over the rental duplex on East Ridge Road in Lebanon.
The adults got up and changed places, wept, made coffee, went outside, came back in. Through the hours, Angel Martin breathed. As the sun came up, she drew her last.
Visitation for Angel Martin is noon-2 p.m. Friday at Rivers Crossing Community Church, Kings Island Drive, Kings Mills, with funeral service at 2pm. Joshua’s Place is taking contributions to help the Martin family: Joshua's Place, P.O. Box 68, South Lebanon, OH 45065, 513-617-9099.