NEWPORT NEWS, Va. (WAVY) — A bill that aims to add a disease to newborn testing in Virginia passed in the House on Monday in a 85-12 vote. The bill now heads to the Senate.
The parents of a young Newport News boy living with the disease say this is a step in the right direction in their fight for Nikola’s law.
Nikola Grujicic was born March 15, 2018. He was 6 pounds, 6 ounces and 19 1/2 inches long. He was born a healthy and happy little boy, and he had his parents wrapped around his fingers.
His parents, Dragan and Lana Grujicic, say Nikola was perfect.
“From day one, he barely ever cried, he was just so content. He just wanted to be loved and cuddled.”
However, before his six month appointment, their smiley little boy starting changing. In fact, the last time Lana and Dragan Grujicic saw their son smile was when he was 16 months old at Disney World.
Nikola is now almost 2 years-old.
“I turned around, and I was like oh my god, he’s really grinning,” Lana Grujicic said.
Shortly before his six-month check-up, Nikola became frequently cranky and would scream. Lana Grujicic also noticed Nikola was clenching his fists often. At the appointment, she told the pediatrician about her concerns and when a few reflex tests didn’t come back as they should have, a neurologist was recommended.
The pediatric neurologist ran a battery of tests on Nikola and after an agonizing three-week wait, the Grujicic’s were called in to get the results.
The news was devastating: Nikola was diagnosed with a rare, inherited condition called Krabbe Disease.
“I wouldn’t wish this on my worst enemy. I don’t want a simple family to go through what we’ve been through, what we are going through,” said Dragan Grujicic.
The myelin or “white matter” in the brain is affected by Krabbe Disease and patients lose their ability to move, speak, see, hear, eat and drink. Life expectancy for infantile Krabbe Disease is less than two years.
It’s the reason why the family created Nikola’s law, or House Bill 97. The family wants to add Krabbe disease and other Leukodystrophies that affect the brain and spinal cord to the newborn screening in Virginia.
“If I could go back and save him, I would, but I can’t. This way I can. His legacy can be — he can save other lives,” said Dragan Grujicic.
With the help of advocates like Hunter’s Hope in New York and Del. Jason Miyares, the bill was written.
“I made a promise to the family that I would introduce this legislation and advance this,” Miyares said. “My hope is that we can get this on the books so other parents don’t go through the agony we’ve seen in this situation.”
Last month, the Health, Welfare and Institutions committee voted to move Nikola’s Law (HB 97) to the appropriations committee. It went under re-review and, in a big push forward, it was approved 85-12 in the House.
The bill now moves to the Senate.
For Nikola, his mother can only manage the disease. He was diagnosed too late for treatment that would help alleviate his symptoms and slow their progression. Treatment involves the use of umbilical cord blood shortly after birth. Cells that carry proteins the Krabbe patient is missing are transplanted like a blood transfusion.
The procedure, however, can only be done shortly after birth because the disease progresses so quickly. As a result, a newborn screening test is the best method to know whether or not an infant has Krabbe.
“I remember asking doctors, ‘Why didn’t you test me for this? You tested me for everything while I was pregnant,'” Lana Grujicic said.
The test, she says, would have cost $6. It would happen during the routine blood test at three months into a pregnancy.
“I can’t understand why it’s so difficult to run another blood test and why you wouldn’t want to,” Lana Grujicic said. “We are not going to stop. It’s only a matter of when. We are not going to be willing to see other babies go through this and have Nikola go through this for nothing.”
One in 125 people carry Krabbe disease.
It’s only an issue if two carriers have a baby. If they do have a child, there’s a 25 percent chance the baby will be affected.
