Push for Levi’s Law 

By Steve Sears

Levi Spencer of Roxbury is a very active 8-year-old. 

“He loves life; he loves doing everything that other kids do,” says his mom, Jillian. “He is quick to adapt. He can do it pretty much quicker than adults can. We’ll be brainstorming and ask,  ‘How can we get him to this place?’ Or ‘How can he interact with the kids?’ And then we look over and he’s already doing it his way and it’s better than what we could have planned. He’s very clever and innovative and positive about himself.”

Levi was born with Spina Bifida Myelomeningocele, which affects 5 – 6 of his vertebrae. The organization, Pray for Levi, was started prior to his birth. It was a website and Facebook page to give updates about Levi, inform others and ask for prayers, and it evolved into a fundraiser when Levi’s family needed funds to adapt their home to be handicap accessible. $100,000 was collected for renovations. “We added a second story to put bedrooms upstairs so the first floor could be (handicap) accessible,” says Spencer.

When the above wrapped up, the Spencer family started movement towards a bill called Levi’s Law, hoping that literature would be available in every healthcare office to give expected parents resources, and a place to go with up-to-date information that maybe the doctors don’t know firsthand. “And for support groups; there’s lots of support groups that I’m in that I just happen to find and stumble upon that doctors aren’t aware of, and it’s great information and resources to give encouragement to expectant parents with a new diagnosis,” says Spencer. Assemblyman Anthony M. Bucco has been working with the Spencer family on the bill, which will  mandate up to date information on Spina Bifida during a prenatal diagnosis appointment, so parents can find support, guidance, and encouragement. If passed, the hope is to provide pamphlets and more to get the news out statewide.

“Faith is a huge part – it’s the only thing that’s gotten our family through,” says Spencer, who received news about Levi following an ultrasound. “The first couple of days after diagnosis were very devastating because it’s just something you don’t think about. But after we prayed about it. I had a very clear moment where God spoke to me and he said, ‘It’s going to be okay.’ He didn’t say everything was going to be perfect, he didn’t say Levi was not going to be disabled. He didn’t say things like that, but he did say it’s going to be okay. And I take that to heart every single day: I wake up with that reminder that it’s going to be okay. And we do that with our faith, and we just believe that we make the best out of every situation. And God’s provided for us already, and we couldn’t have done it without that faith.”

Although still paralyzed from the waist down and using assistive devices that help him walk and sit, Levi is still strong. “We did hit a little bump in the road, where he had a pressure wound. And he just actually had surgery to close that up,” says Spencer, “so walking has taken a step backwards so to speak, but that doesn’t change our hearts. Our prayers aren’t so much that he walks, but that he has a relationship with Jesus, and that he is happy.” Jillian, who along with husband Jason are also parents to an older son, Shane, 10,  and a daughter, Ruby, 5, adds, “He’s a carefree, active little love.”

Visit the organization’s Instagram page at Livinglifelikelevi.

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