Fresno infant diagnosed with rare disease, parents fight for treatment

FRESNO, Calif. (KFSN) -- What should be a celebration for a Fresno couple welcoming their twin babies home has become a fight for care for one of the boys diagnosed with a rare disease.

Kaylee and Richard Lazaro welcomed their twin boys Rykker and Bekkem on September 24th, but Rykker was immediately whisked off to the NICU with respiratory issues.

It wasn't until nine days later they found out he had a very rare disease.

If left untreated he could die before his second birthday.

While at home, Rykker and Bekkem sat in their swings occasionally cooing, rarely fussing, as their parents explain what they've been through in their month of life.

The boys haven't spent much time at home since their birth.

Rykker was immediately taken to the NICU with respiratory issues and Bekkem would join him three days later for other reasons. The two would remain in the NICU for the majority of their first 3 weeks.

"It's more emotionally draining because it's not like your typical Oh, have a baby you get to come home," said Kaylee

Nine days after they were born, their parents, Richard and Kaylee were given a diagnosis for Rykker, he had tested positive for a very rare disease, Spinal Muscular Atrophy or SMA.

"Initially finding out about that it was just a big emotional roller coaster," said Richard. "We were able to take him home the next day, but now you were having to turn back around and take them to Valley Children's to get more tests done."

According to the National Institute of Health, the disease can damage and kill motor neurons that control movement and can impact speaking, walking, swallowing, and breathing.

Rykker was diagnosed with Type 1, the most severe. In Type 1, symptoms typically start to show before babies reach six months and symptoms progress from there.

Without treatment, many children die before the age of two.

Newborns have only been screened for SMA in California since 2020, it often wasn't diagnosed until symptoms were present.

"By the time they become symptomatic, it's already too late," said Richard.

Though there are treatments available, they come at high a price.

Option 1, ZolgenSMA would be a one-time treatment with monitoring and care after costing $2.2 million.

Insurance denied the Lazaros coverage, they're planning to try again, but they don't have any time to waste.

"Ultimately the more the days pass, the more that he's losing the ability and the neurons to support his respiratory system to be able to have functioning movement," said Richard.

The two other options are $446,000 and $300,000 a year for the rest of Rykker's life.

On Tuesday, the Lazaros were able to start option 3 while they push for approval for ZolgenSMA.

For now, the couple is enjoying having their baby boys out of the NICU and at home.

"It's way more relaxing, knowing that they're both here,' said Kaylee. "When they weren't it was, I feel like it was more stressful, but with everything going on, it's I just feel better that they're both like, home with us."

Doctors told Lazaros there is no guarantee treatment will work but they are willing to do whatever it takes to help Rykker.

They were told it's unlikely Rykker will ever walk, but the disease doesn't have any cognitive impacts.

They've set up a GoFundMe for anyone who would like to help.

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