PASCO, Wash. – August is National Spinal Muscular Atrophy Awareness Month. Two boys and their parents are teaming up to raise awareness for the condition on August 19.
According to Johns Hopkins University, Spinal Muscular Atrophy is a disorder that affects the nerve cells that control voluntary muscle movements. Harper and Hendrix Ramos have lived with the condition their whole lives and want to bring awareness to those with SMA.
Crystal Ramos, the boys’ mother, says they found out Harper and Hendrix had SMA when they were 15 months old.
Ramos says that this disorder brings challenges.
“Just finding different ways to accommodate and find different ways to have them have the same experience as others,” said Ramos. “Because this world isn’t as accommodating as we would like it to be.”
Ramos says this hasn’t slowed Harper or Hendrix down as they love to…”play games with my friends,” said Harper. “I especially like Fortnite.” I’m a big fan of anime,” said Hendrix.
Living with SMA, the family decided to do something about it.
They teamed up with Eatz Pizzeria and Deli for an event to bring awareness and raise money to help find a cure.
Phil Forzaglia, the owner of Eatz Pizzeria and Deli, says as a small business, aside from making good pizzas, he has another goal.
“Us being a small business, we like to give back to our community,” said Forzaglia. “So Hendrix and Harper, they’re like family, they are family. So we just want to do something. Again we get a lot of support from the community, we just want to give back.”
The event will have a pizza and hot wing eating contest and Harper and Hendrix want you to come out and have a good time.
“Cure SMA,” said Harper. “SMA stands for Spinal Muscular Atrophy.” Come on down to the best pizza place right now,” said Hendrix.
Ramos says there is treatment; both boys have been taking it since they were three.
