A baby boy who was born with a rare genetic neuromuscular disorder is now thriving after he began a life-changing medication that was approved in 2016. He is the first child in Texas to receive the treatment.

Key Takeaways:

• Spinal muscular atrophy type 1, also called Werdnig-Hoffman disease, causes muscle weakness, low muscle tone, and difficulty breathing and swallowing.

• Without treatment and breathing support, children with SMA type 1 will likely die before their second birthday.

• New medications are saving lives, including Spinraza, a drug delivered directly to the cerebrospinal fluid.

• Baby Jesse Vasquez began taking Spinraza after he was diagnosed with SMA type 1 through newborn screening and other medications were not helping enough.

• Jesse is now walking and thriving.

• Tragically, one study found that 100% of babies who tested positive for SMA in the womb were aborted.

The Details:

Jesse Gonzalez Vasquez, now age one and a half, was born with spinal muscular atrophy (SMA) and diagnosed when he was just seven days old.

According to his family's fundraising page, "Jesse was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 through newborn screening. We had never heard of SMA before, and our world changed in an instant. As a parent the last thing you want is something to be wrong with your children. When we were first told Jesse might not walk, it broke our hearts. But we've come to realize that walking isn't everything. Jesse is still strong, determined, and reaching milestones in his own way. Our kids are so much more than what SMA might limit."

At just 29 days old, Jesse began taking two medications: Zolgensma and Evrysdi, to give him "a fighting chance." He began attending physical therapy and occupational therapy every week.

Jesse's mother, Lupita, told PEOPLE magazine, “The information made my heart drop. 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.” She worried about what Jesse's life would be like living with SMA.

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

After being on two SMA medications and not seeing as much progress as they had hoped, doctors suggested that the family switch to Spinraza, a drug delivered directly to the cerebrospinal fluid where the motor neuron loss occurs, helping to increase production of the spinal motor neuron protein. He received his first dose at four months old.

“Within just a couple of weeks of making the switch, Jesse made the fastest progress we’d ever seen,” Lupita explained. “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.”

He "keeps getting stronger" and recently took his first steps in June. “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," said his mother.

Though she doesn't "know exactly what the future holds," she said she has "faith that everything will be okay."

What To Know:

• There are five severity levels of SMA with type 1 being the most severe. SMA type 1, also called Werdnig-Hoffman disease, causes significant muscle weakness, low muscle tone, and difficulty breathing and swallowing.

• Without treatment and breathing support, children with type 1 will likely die before their second birthday.

• Symptoms typically appear before six months, but newborn screening is allowing children to be diagnosed before symptoms begin.

• According to the Cleveland Clinic, there is no cure for SMA, but new advancements in therapies and medications.

• Although considered rare, SMA is the most common severe hereditary disease of childhood after cystic fibrosis.

• Babies can be tested for SMA in the womb via carrier screening for the parents and diagnostic testing such as chorionic villus sampling (CVS) or amniocentesis.

• If both parents have a genetic mutation for SMA, there is a 25% chance that each of their children may have SMA.

• Research published by the National Institutes of Health show that in a study of 44,953 women, there were 17 couples who were considered to be at high risk of SMA, 14 of whom were pregnant and 11 of whom underwent prenatal testing. Six of those babies were diagnosed with SMA, including a set of twins and all six of those babies — 100% — were aborted.

Why It Matters:

Despite all of this, The New England Journal of Medicine reported that a prenatal treatment is available for these children. One baby girl, diagnosed at 32 weeks, was given the drug risdiplam after her parents had lost another child to SMA and suggested that doctors start the treatment in utero.

Studies show that risdiplam can cross the placenta and the mother took the medication orally from 32 weeks until delivery at 39 weeks. Doctors found that the medicine had reached the baby girl in the womb and even at 30 months post-birth, she showed no symptoms of SMA.

The Bottom Line:

As Jesse's life proves, with all of the hope that new treatments are bringing for children with SMA it is a tragedy that these children would be discarded as defective and unworthy of life.