NEWPORT NEWS, Va. (WAVY) — Lana and Dragan Grujicic are fighting for their baby boy Nikola every day.
Nikola was diagnosed with Krabbe Disease, where the white matter in the brain is affected causing loss of movement and the ability to see, hear and speak.
“His disease has not progressed a whole lot since the last time they saw him. He has lost a bit more hearing and eyesight but he can still see pretty close up,” said his mother, Lana.
10 On Your Side has been following his story since 2019 when his family began their push for Nikola’s Law. This law would add Krabbe Disease to the newborn screening panel in Virginia. His family says Nikola was diagnosed too late for treatment, so they work to manage his disease. Despite the challenges, the family loves to create memories with their baby boy.
“He absolutely loves the water. We try to take him to the beach as much as we can locally but we have some places on our list we’d still like to go with him,” said his father, Dragan.
But taking him places and using his car seat has become difficult.
“Right now, I carry him and I take him to the car seat and I hold his head while Dragan holds his legs and crosses them and holds his arms at the same time and we gently place him in the car seat,” said Lana.
The family is looking to get a wheelchair-accessible van.
“One of us is always in the back seat with him to hold his head in case it falls to the side, because his car seat doesn’t give him the support like his wheelchair or stroller does,” said Lana.
So far, the community has raised $9,000. The family says they are so thankful for the support from the community.
If you would like to help the family, visit this link.
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