When Tomball residents Rudy Colunga and Amanda Degagne found out they were going to be parents, they didn’t realize that the birth of their son would turn into a long battle that would forever change their lives.

“(The doctors said) it was a perfectly normal pregnancy,” Colunga said.

When little Rudy Colunga III was born everything seemed normal, with a minor exception.

“He was hypotonic but we didn’t realize anything was bad until a couple of weeks later,” Colunga said.

That’s when doctors told them the news. Little Rudy was diagnosed with a rare neuromuscular disease called spinal muscular atrophy.

“It causes a wasting away of the muscles,” Degagne said. “He couldn’t move anything.”

Doctors told them that the disease would eventually prove to be fatal. The young couple began to research the disease and found treatments that would, at the very least, bring comfort to the infant.

“(Besides the disease) he was an average four-month old,” said Colunga. “He was extremely happy.”

After four months of agonizing and sleepless nights, trips to the hospital and special one-on-one moments, little Rudy succumbed to the disease.

“There’s nothing worse than knowing that your baby is going to pass away,” Degagne said.

The couple has now made it their mission to bring awareness to this rare, but fatal disease.

“We want a cure, but at the very least we want to be able to alleviate suffering,” Colunga said.

That’s why the couple held a candle light vigil recently at Christ Bridge Fellowship in Tomball. The couple also brought Tomball Mayor Gretchen Fagan on board. Fagan proclaimed August as Spinal Muscular Atrophy Awareness Month in the city.

“The parents asked me and I felt it was important,” Fagan said. “They are going forward to try and make something good happen and I think they need our support.”

While the volunteering and activism doesn’t ease the pain of losing their son, both say they feel like it’s a calling for them now.

“We are so close now to bringing genetic therapy to a human trial,” said Degagne. “So any little thing we can do to bring awareness to this we will.”

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