COLUMBUS (WCMH) – An Ohio family’s daughter has the chance to fight a very rare and deadly disease, thanks to a routine newborn screening test.
The screening for Krabbe Disease recently became required by law last July and Ohio is one of the few states that does it. Without the test and early detection, doctors at Nationwide Children’s Hospital said children diagnosed with the metabolic disease only live to be about two years old.
“If we didn’t have that in place she would have absolutely no shot at all of any kind of life,” said parent Ryan Foster.
His daughter, Lennon, was born on April 19th. She’s already preparing for a cord blood transplant scheduled for later this month at Nationwide Children’s Hospital.
“Now, we actually have a shot with Lennon because we detected it early because of the screening and we have the ability to go in and actually do something about this disease,” said Foster.
Lennon is the first baby at Nationwide Children’s Hospital to be diagnosed with the disease after the Madison Layton Act was enacted last July.
It requires the extremely rare, metabolic disease to be included in the newborn screening program in Ohio. But, not all states require it.
“I just want to bring awareness out to all the other states… why we wouldn’t just add this one more thing on and have something we can save another little baby’s life,” said Foster.
Lennon’s team of doctors said early detection is crucial. A child can have more neurological damage, the longer a patient waits for treatment.
Foster said he’s thankful for the dedicated team at Children’s, who gave them hope for their daughter’s life.
“There’s no cure for it. So, this is the best shot you’ve got,” said Foster. “If this takes and then she can go on to live a normal life or semi-normal life. We’re hoping for the best.”
Lennon begins chemotherapy on Monday, that will make it possible for her transplant on the 23rd.