What started as a routine newborn screening quickly changed everything for Lupita Vasquez and her family.

Seven days after giving birth to her second child last year, Vasquez learned from her pediatrician that her son Jesse had tested positive for spinal muscular atrophy, or SMA, a rare genetic neuromuscular disorder that causes certain muscles to weaken and atrophy.

Jesse was diagnosed with type 1 SMA, a severe form of the condition also called Werdnig-Hoffmann disease. According to the Cleveland Clinic, symptoms appear within the first six months of life and can include limited head control, decreased muscle tone, and difficulty swallowing and breathing.

“At that moment, I had no idea how much of our lives were about change,” Lupita Vasquez, 29, told PEOPLE.

“Since SMA is so rare, they didn’t have many answers for me, and I had to wait to speak with the neurologist to get more information,” she said. “Our family had never heard of SMA before, we had no idea what it was. I did what I shouldn’t have done, and I turned to Google. Reading about SMA and seeing pictures online made everything so much harder to process.”

“The information made my heart drop,” she continued. “I just kept looking and holding Jesse, and none of it made sense to me. He looked healthy, with no signs of anything I was reading about. My baby looked perfect.”

Vasquez said she also questioned if Jesse’s condition was her “fault” and the result of something she had “done wrong” during pregnancy.

“Did I not eat healthy enough? Did I not take enough vitamins?” she said she wondered.

The morning after the diagnosis, Vasquez and Jesse’s father met with a neurologist, who explained the condition and what the family would be facing. Vasquez said she cried through the entire appointment.

“I felt completely numb, like a zombie trying to process everything,” she told PEOPLE.

Jesse began two treatments commonly given to newborns after an SMA diagnosis in his first month of life, but Vasquez said he progressed less than the family had hoped.

“He wasn’t crawling yet, so his neurologist suggested we consider switching to Spinraza,” she said.

Spinraza is a prescription medication delivered directly to the cerebrospinal fluid at the site of motor neuron loss. It helps the body increase production of SMN, or spinal motor neuron, protein. The treatment became the first FDA-approved treatment for SMA in 2016.

Vasquez said a higher-dose regimen of the drug had just become FDA-approved and available when Jesse switched treatment.

“It felt like a sign from God and such a blessing,” she told PEOPLE. “Instead of four loading doses two weeks apart, it was only two loading doses two weeks apart, and then the maintenance would be every four months, which made us feel so much better.”

Jesse received his first Spinraza treatment when he was just over 4 months old.

“Within just a couple of weeks of making the switch, Jesse made the fastest progress we’d ever seen,” Vasquez said. “It was amazing to watch and it just showed us that every child with SMA has their own journey, so it’s important to just ask questions, trust your team of doctors and choose what you feel is best for your child.”

Jesse is now 17 months old. Vasquez said he “keeps getting stronger” and took his first steps on June 26.

“It’s been a whole month of pure joy!” she said. “Even though he didn’t meet some milestones at the ‘normal’ ages, we have learned that every child is different and they have their own timeline, especially children with SMA.”

Vasquez also praised Jesse’s care team, including his pediatrician, neurology team, physical therapist, occupational therapist and pulmonology team.

“They have been there every step of the way,” she said. “This journey has not been easy, but I’m so thankful to God that we have never walked it alone.”

She said she has since become passionate about raising awareness for SMA and helping other families facing the diagnosis.

“I know how scary this whole journey is,” she said, adding that she wants to encourage other families to not “lose hope” and remind them that “SMA doesn’t define our babies.”

Looking ahead, Vasquez said her family is taking things one day at a time and celebrating Jesse’s progress.

“We don’t know exactly what the future holds, but I have faith that everything will be okay,” she said.

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