PHILADELPHIA (WTXF) Imagine finding what your child has a rare deadly disease. Now imagine finding out it’s just not one of your children. A local mother is fighting to raise awareness about a disease ravaging her family.
Picture perfect; three great kids whirling bundles of energy--8-year-old Tahron Jr., 6-year-old Tyree, and 2-year-old Thalia tearing it up on 4-wheelers. Then, the phone call that changed everything something was wrong at kindergarten.
Cassandra Herring's son Tyree was speaking gibberish at a wall, not knowing what to do, confused and in the corner. The diagnosis Tyree had a rare deadly genetic disease that attacks the brain called ALD- Adrenoleukodystrophy.
“The disease affects the white matters in the brain (there's gray and white matter) you can see in these pictures it's literally being destroyed,” said Erin O'Connor Prange, MSN, CRNP
Within weeks, Tyree began regressing and rapidly.
“My son he lost everything in 2 months. He went from running, jumping ,playing, talking, eating. He was a tank- to- nothing. He smiles and laughs," Cassandra expalined..
Today, he can no longer lift his own head and needs constant care. His condition is too advanced for treatment
and that's just the beginning of the heartbreak for the Herring family. It turns out, the eldest child, Tahron Jr., has the same rare disease.
"One day you have three beautiful kids, one day you get told by doctors two of them might be taken away from you," said father, Tahron Herring.
Tahron Jr's condition was caught early enough. He is being treated, first with chemotherapy and just recently with a bone marrow transplant.
ALD affects 1 in 17,000 people, mostly boys, and is passed from mother to sons. A Leukodystrophy Center at CHOP just opened this spring. Dr. Amy Waldman is the director.
Friends have wrapped their arms around the family to help #savetheboys following their journey on Facebook to #helptheherrings.
Cassandra prays for miracles and works for change. She wants ALD to be added to the list of diseases tested for at birth.
"We shouldn't be in this position. No family should be in this position with a disease that's treatable and has a new born screen," she said.
The federal government just recommended ALD be added to the newborn screen this summer, but it's up to each state to do it. So far, only New York does. Early detection can be lifesaving.
To help in Pennsylvania, please contact the health committee. To follow the Herring Family's journey, please click here.