A Phoenix mother is fighting to expand Arizona's newborn screening panel. That is the heel-prick blood test all babies get to screen for disorders that, if detected early, can be effectively treated.
"I believe this was PJ's purpose, to help other families," said Janelle Zavodnik, whose youngest son passed away in 2015. He died just more than a year after being diagnosed with a genetic disorder called Adrenoleukodystrophy.
The diagnosis came too late and his symptoms were too advanced for treatment. "It seems senseless," said Zavodnik. "If we would've had the knowledge PJ might still be here."
Right now that disorder is not included in Arizona's Newborn Screening Panel. Our state currently screens for 31 of the 35 nationally-recommended disorders. The lowest number in the country.
"It is hard to believe that if you're born in another state you have a better chance at getting this caught early on and having your child live and be treated than if you live in Arizona," said Breann Westmore, who works with March of Dimes.
The organization is now advocating for SB 1571, which would add two more conditions to Arizona's Newborn Screening Panel - x-linked Adrenoleukodystrophy, or X-ALD, and Spinal Muscular Atrophy, or SMA. It would also increase funding for the state health lab's testing and follow-up procedures.
"These are two conditions that most other states are testing for, they are the more prevalent conditions that will see the highest incidence rates and that we think we can make the most immediate impact in the lives of Arizona moms and families," said Westmore.
States decide which conditions to screen for based on factors like state laws, frequency of the disorder, availability of treatment and follow-up, financial costs of screening and funding sources.
Arizona added two other conditions to the panel in 2017. "I'm very hopeful that 2020 will be our year," said Zavodnik.
Zavodnik's older son, Kody, was also diagnosed with X-ALD shortly after his younger brother. His diagnosis, however, came in time and he manages the condition with steroid treatments.
"Losing a child is the absolute worst thing that anyone can ever go through and I don't want anyone to ever feel and to experience what we have," said Zavodnik.