DAUPHIN COUNTY, Pa. (WHP) — A central Pennsylvania baby is battling a rare genetic disease, and now her mother is sharing their journey in hopes of spreading awareness to other families.

3-month-old Harper Cugini was born with spinal muscular atrophy, or SMA, Type 1, a rare genetic disease that affects the muscles, bones and respiratory system.

“It has been a fight since day one with Harper,” her mother, Samantha, said. “And just like we say, it’s another day and another fight.”

For Samantha, that fight began the day Harper was born.

“I’ve never felt so helpless in my life,” she said. “She is 3 months old. She doesn’t have a say.”

Health experts said SMA affects about one in every 10,000 babies born in the United States. “It is a spinal muscle atrophy. It is a disease that affects her muscles and her bones, as well as her respiratory,” Samantha said.

According to Children’s Hospital of Philadelphia (CHOP), patients with the more serious form of SMA, Type 1, can begin showing symptoms within the first six months of life. Those symptoms can include muscle weakness, spontaneous tongue movements, difficulty feeding and problems breathing.

“She has a very complex disease. She is very fragile,” Samantha said. “This hasn’t been easy, and it’s something I never thought that I’d be going through in my entire life.”

For Harper, the challenges of SMA have meant spending her entire three months of life in the hospital.

As Samantha watched her daughter battle the disease, she spent months pushing to get Harper to CHOP, where she believed Harper could receive specialized care for SMA Type 1.

“I know Harper is a fighter,” Samantha said. “And I know regardless of where she’s at, she’s going to pull through.”

Now that Harper is at CHOP, Samantha wants more people to know about SMA and the importance of early detection.

“This is a very rare genetic disease that needs to be spread, needs to be known,” she said.

According to Mass General Brigham, a nonprofit academic health care organization, parents can ask their doctor about carrier screening before pregnancy.

The screening uses a blood test to determine whether a person carries certain genetic changes that could be passed on to their child. Newborn screening can also help identify SMA in some cases before a baby begins showing symptoms, but catching it early helps families get the care they need sooner.

“It is bad,” Samantha said. “So I always say that if I was not living this, I would not believe in it.”

Through it all, Samantha said she is holding on to hope and believes one day Harper will be able to live the life she deserves.

“Harper is not a statistic, and she deserves every possible chance at life right now,” Samantha said.

Samantha hopes Harper’s story will help more families learn about SMA and know what questions to ask early.

If you’d like to help Harper with medical expenses the family has set up a fundraiser.