A newborn baby boy diagnosed with spinal muscular atrophy (SMA) has received a one-time IV infusion called Zolgensma, which could prevent the deteriorating effects of the condition.
Joseph Crew Delia was born on May 6, 2021, to Hali Saylor and Joseph Delia. He was seemingly healthy, yet less than two weeks after his birth, his newborn screening results showed that he was positive for SMA.
“He was a perfectly healthy boy,” said Saylor. “Eight pounds, eight ounces, chunky little man. That’s why we were so shocked at the newborn results because we were like, he is so healthy.”
SMA is a degenerative disease that occurs when a specific gene that makes a protein for motor nerve cells is missing. Without that gene, the motor nerve cells begin to die off and bodily functions such as eating, breathing, and moving become difficult and then impossible. The earlier the symptoms appear, the more severe the condition is for that child.
According to a 2020 article on SMA News Today, only 18 states test newborns at birth for SMA, making Joseph Crew a very lucky baby. He was able to be diagnosed prior to losing any of his motor functions.
Based on his diagnosis, Joseph Crew qualified for Zolgensma, which is available for children under the age of two diagnosed with SMA — but the cost of the one-time infusion is $2.1 million. Insurance covered just $500,000 of that cost, so Delia and Saylor began a GoFundMe campaign to raise the rest. They haven’t yet reached their goal, but Joseph Crew was able to receive the infusion on June 16, 2021. While it isn’t considered a cure, the treatment helps to hold back the progression of SMA.
“It’s just amazing at the amount of people that came out, complete strangers who are willing to donate and help his cause, help our little man here,” said Delia. The couple is now able to look forward to a healthier future for their son, and they are working to raise awareness to help other families as well.
While less than half of all states test for SMA at birth, more are likely to introduce the testing now that there is a treatment available for the condition. SMA is also detectable prior to birth, and for parents who know they carry the risk of having a child with SMA, prenatal screening can be a lifesaver when newborn screening isn’t available.
READ: Infant in England first to receive life-saving drug for spinal muscular atrophy
Lexa Dennis was still in her mother’s womb when she was diagnosed with SMA in 2020. Her older brother Axel was diagnosed after he began to lose some of his motor functions, so the parents knew that baby Lexa had a 25% chance of having SMA as well. Zolgensma was approved in 2019 and Axel was five weeks old when he was diagnosed. However, insurance denied him the infusion until just two weeks shy of his second birthday, which would have been the cut-off for him to receive it. By then he had lost his ability to smile and to breathe without assistance. Zolgensma can’t bring those abilities back. His parents wanted to ensure the same thing didn’t happen to Lexa.
“We did an amnio since we knew we had a 1 in 4 chance of having another SMA child,” said Lexa’s mother Andrea James. “It wasn’t as scary this round two. It was just advocating and getting on it. Making sure we had a good path for her.”
Knowing that Lexa had SMA prior to her birth allowed her parents and medical team to secure Zolgensma through insurance for her before she was even a week old. Because of that timely treatment, she is likely going to be able to walk, breathe, and eat on her own.
“Luckily we had physicians that were able to diagnosis her prenatally, which was a big step,” explained neonatologist Dr. Kimberly Stewart, “because most babies are diagnosed after they’re greater than a couple weeks of age to a month and by then the disease has already started to progress. So the medication may help slow it down or stop it at that point but the baby is already symptomatic.”
While abortion advocates use prenatal screening as a seek and destroy weapon for children who have conditions such as SMA or Down syndrome, in reality, prenatal screening is a pro-life tool that can be used to help save countless lives if used in an ethical manner instead of being used to search out and destroy those with disabilities.
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