Fresno infant with rare disease defying the odds

Almost a year ago, Action News brought you the story of the Lazaros .

Richard and Kaylee Lazaro had just welcomed twins Rykker and Bekkem, but Rykker was rushed to the NICU and later diagnosed with Spinal Muscular Atrophy (SMA).

He was able to receive an infusion of ZolgenSMA, a one-time treatment that's only been around since 2020.

Since then, he has shown improvement, but it's going to be a lifelong battle entailing medication, physical therapy, and appointments with specialists.

"The list goes on to the point where it's four to eight appointments per week," said Richard Lazaro.

Bekkem is very active, crawling and starting to walk.

Rykker is a bit behind, but he is making progress.

He makes sounds, can roll over, and can move his arms.

"There's still a lot of unknowns. So, we try to cherish every moment we can with him," said Lazaro.

One of those cherished moments was the twins' first birthday party.

The couple sitting before us today says they have a different outlook on life compared to a year ago.

"I know God has it handled. Whatever happens, happens and at the end of the day we just want him to have a good quality of life and I know God will provide that," said Kaylee Lazaro.

They're also on a mission. They've created a foundation to raise money to keep up with Rykker's medical expenses.

"To not only spread awareness, but also raise funds. Not just for him, we also want to donate a certain percentage back to SMA research," said Lazaro.

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