'FIGHT FOR THE BOYS' Rare disease strikes family Mothers fight to pass law requiring ALD screenings at birth

MARION OAKS – Seven-year-old Tyree Herring spends most of his days motionless in a hospital bed that is strategically placed in his grandmother’s living room beside a large window that overlooks a series of birdhouses.

Not too long ago, Tyree attentively watched the birds peck away at the feeders. But now, as a genetic disorder destroys the sheath around his brain, the boy rarely notices the feeding frenzy just outside.

Tyree’s brain is rapidly deteriorating. He has lost most of his neurological functions. He gets all of his nutrition through a gastric feeding tube and takes dozens of medications to ease chronic pain and prevent possible seizures.

Wearing a black #SaveTheBoys shirt, Tyree did move the corner of his mouth slightly a few weeks ago. He was listening to the voice of Patti DiLouie, one of many nurses who helps administer the around-the-clock care that he requires.

Though Tyree looks catatonic, he can hear and see to some degree. But those senses are fading. His mouth twitched when DiLouie fluffed his favorite Peppa Pig pillow and talked about his love of pretty ladies and cartoons.

“He loves Nickelodeon,” DiLouie said. “His favorite movies are ‘Cars’ and ‘Cars 2’ – really any Disney movie, especially those with lots of action.”

Tyree’s mother, Cassandra, 35, leaned over that day and placed her lips on his lips, showering her son with many smooches.

“I love you,” she said, turning to others in the room. “He lost his smile a year ago. They (doctors) say he has about 18 months to live, probably less.”

Most parents can’t imagine being in Herring’s shoes, watching helplessly while a child’s health deteriorates. But for Herring, this is not the first time she has been through such an ordeal.

Herring’s son Tahron, 9, died last Labor Day. And 10 weeks later she also watched her nephew, Donnie Shuler Jr., 10, die on Thanksgiving Day in the arms of her sister, Rachel Pio.

The cause of death for both boys is the very same genetic disorder that is killing Tyree: Adrenoleukodystrophy (ALD).

ALD is an extremely rare genetic disease that strikes boys between the ages of 4 and 10. It quickly destroys the child’s myelin, the sheath around the developing brain. In boys, the damage causes the loss of most motor functions. The children go deaf, then blind, and they eventually die.

As the family faces the likelihood of another funeral in the near future, they have chosen to fight to save lives. Herring and Pio are lobbying federal lawmakers, as well a state lawmakers, to pass a law requiring ALD screenings at birth.

For years, attempts to get lawmakers to add ALD to the national newborn screening mandate have failed. One federal bill, called “Aidan’s Law,” died in appropriations last year. The bill didn’t even make it to the floor for a vote. A Florida newborn screening bill, called “Gabriel’s Law,” died in April 2015 after it failed to get out of a health care subcommittee.

The reason these bills are being passed over is that it is difficult to justify spending millions of dollars to require newborns to get screened for an extremely rare disease that, even if detected at birth, has no guaranteed preventative treatment or cure, national ALD experts say.

“I want to fight to save the boys,” Herring said. “I have lost one child and about to lose another. Newborn screening could help parents start treatment before their child starts having symptoms.”

Until recently, there was no hope for children with the disease. But now, with the advancement in gene therapy, national experts are hoping that lawmakers will see that screening could #SaveTheBoys.

“We have to fight for the boys,” said Pio. “That’s what we have to do. Fight for the boys.”