Elkins Park Mom Gets ALD Diagnosis For Both Sons, Raises Awareness

By Cherri Gregg

ELKINS PARK, Pa., (CBS) -- An Elkins Park mother of three received a devastating diagnosis affecting not one, but both of her young sons. She's hoping to raise awareness about their rare, deadly disorder.

A year ago, Cassandra and Tahron Herring and their three children, Tyree, 6, Tahron, Jr., 7, and Thalia, 2, were a pretty normal family.

"We were doing regular things in the fall," she says, "they were in school, in the winter we went to Sesame place."

Then, in April, neurological red flags flew high on her son Tyree.  His kindergarten teacher reported issues such as nonsensical speech and an inability to focus. Later, Herring says he had headaches and a fever.  She took Tyree in for a battery of tests; none were abnormal.  He eventually ended up at CHOP to see a specialist.  And on June 4, the Herrings life changed.  Tyree was diagnosed with Adrenoleukodystrophy also known as ALD.

"They said there is no cure, he's too progressed for treatment," says Herring, "I could see [the doctor's] heart break as she shared the diagnosis."

ALD is a rare genetic disorder that destroys the nerve cells that allow the brain to think and to control muscles.  Doctors demanded that TJ be tested immediately.  The next day, the Herring's got the devastating news.

(Reporter:) "Both of your baby boys?"

"Yeah....it was a shock, to say the least," said Herring.

Cassandra says, Tyree, who is now 6, has a grim prognosis-- just one to three years to live.  But within two months of his diagnosis, she says, he lost his ability to walk, talk and eat.  TJ's disorder was less progressed and he was strong enough to get a bone marrow transplant.

"At least we have hope," says Cassandra, who notes TJ is not out of the woods yet.

One in 18,000 children have the disorder, that only effects boys and men. Herring is a carrier.  Her daughter Thalia, could be one too.  She had her sisters test their boys and says one of her nephews, DJ, was also diagnosed with ALD.  Luckily, he is asymptomatic.

"Every person that has it is affected differently," she says, "but the sooner you know, the better."

If the disease is detected early, there are more treatment options. If it is detected after the disease has progressed, there is little doctors can do.  Herring wants to raise awareness and change laws so that ALD joins the regular list of genetic tests performed on babies at birth.

"I hope that ALD will be on every newborn screen in every state," she says, "if we had known sooner, things may have been different."

Meantime, the Herrings are making due.  Tahron, Sr., a veteran who did two tours in Iraq, works a flexible schedule so he can attend doctor's appointments.  Cassandra stays home.  The Herrings went on a Make A Wish trip to Florida this summer.  TJ is still getting treatment after his bone marrow transplant and chemo, but he's holding his own. Tyree is struggling, but he's still smiling.  And Thalia, well she's just brightening everyone's day.

Thalia: Would you like some tea??  How about some lemon tea??

How can you not smile at that.

For more on ALD, go to http://www.stopald.org/what-is-ald/

For more on the Herrings go to: https://www.facebook.com/HelpTheHerrings/?fref=ts

To donate to their GoFundMe Page, go to: https://www.gofundme.com/herrings-com