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Cassie Onaga's Story

Cassie Onaga was born eight weeks premature and at six months of age, was diagnosed with cerebral palsy. Her parents, though saddened by the diagnosis, worked diligently with their local Early Intervention program to meet the physical needs of their daughter. Then, at 18 months old, Cassie contracted influenza and sustained a high fever which sent her into cardiac arrest. At the acute care hospital, Cassie’s little body lay amid a mass of tubes and equipment, hooked up to a ventilator. She was unresponsive. The Onagas prayed for her life.

A few days later, the doctors would deliver yet another horrific blow—they had concluded from tests performed on Cassie that she had Leigh’s Syndrome, a rare genetic neurometabolic disorder that affects the central nervous system, eventually causing death. They explained that most children with Leigh’s Syndrome don’t live past the age of three, and in Cassie’s current state, her doctors determined she had merely two weeks to a few months to live. They confirmed she might not make her next birthday. Cassie’s parents were devastated.

“I just kept praying,” states Alice Onaga, Cassie’s mom. “My husband and I were completely lost. We didn’t know what to do or think. Had someone told me this was happening to their child I would have been devastated for them. But now, this was my reality as it was my child, and my heart was broken. Her brothers were panicked and just wanted their sister back. We just told them to keep praying for her.”

Cassies’ small frame had become contorted. Her knees were tucked up close to her chest, unable to be straightened, while her back was severely arched and her fingers were tightly clenched. She had lost the ability to hold up her head. Her body temperature would fluctuate and she no longer spoke or made sounds. When her eyes were open, she would stare straight ahead with an empty gaze, showing no signs of recognizing those around her.

As Cassie’s tone increased and her condition became complicated by seizures, a Marianjoy Medical Group physician was called in for a consultation. It was suggested to the Onagas that Cassie might benefit in receiving therapy at Marianjoy to improve her physical condition. After 13 weeks in an acute care hospital, she was transported via ambulance to Marianjoy in June, 2005.

The Onagas were unsure what to expect. “I was obviously very concerned about my daughter and uncertain of what her future might be,” explains Alice. “My husband and I are of Catholic faith and when the ambulance pulled up to the hospital, there was a statue of the Virgin Mary in the driveway. I immediately felt a sense of calm and hope. I thought maybe things would be okay.”

After the initial evaluation at Marianjoy, Cassie’s team of therapists and specialists were assembled. She would receive physical and occupational therapy to work on her body mechanics and to help stretch her little fingers and legs, as well as speech to enable her to make sounds again.

“I remember watching closely as the therapists and doctors worked with my daughter,” notes Alice. “Dr. Keen would come to Cassie’s room everyday, sit down right next to her on the floor, and immediately would relax us all. Even though the therapy was intense, I watched everyone who came in contact with Cassie treat her so gently and kindly, like she was their own child. And that put me at ease.”

For seven weeks, Cassie received an intensive inpatient therapy regimen and began to quickly improve. “I can remember the first time I looked in her eyes and realized that she was now actually looking back at me and recognized me,” explains Alice. “And then she smiled at me. I can’t tell you how happy I was!”

By the time she was ready to be discharged to outpatient therapy, her back and legs were stretched out and had returned to a normal position. Her little fingers were unclenched and she was able to purposefully pick up toys and objects. She had also once again found her voice and was making cooing and giggling noises.

Today, Cassie is five years old and continues to receive outpatient therapy at Marianjoy. Many of the same therapists she had as an inpatient continue to work with her and follow her progress as an outpatient. She is now in kindergarten, loving school and her new friends.

Because of the Leigh’s Syndrome, Cassie can become seriously ill, requiring hospitalization. Unfortunately, this causes her to have a setback in her progress and lose some function, mostly with her speech.

“She is working on being able to sit up with support,” explains Alice. “But she is now using a communication device and switches that she turns on and off to help her communicate. She makes an expression and then the switch helps her to verbalize her wants or needs. She’s able to greet her friends or tell us what she would like to do. It’s amazing how far she’s come.”

“I can’t tell you how wonderful the staff at Marianjoy has been to Cassie and our entire family,” states Alice. “They have been so kind and patient with us. When we first arrived at Marianjoy, we didn’t fully understand the extent of Cassie’s disability. I hadn’t really realized in my own mind and heart how bad it was. But the entire team gave us hope. We depended on them for not only her care, but to help us through this emotionally.”

Alice notes that Cassie’s neurologist is amazed at her improvement. Her medications have also been greatly reduced and she continues to progress.

“There are so many pieces to Cassie’s everyday life,” explains Alice. “But Marianjoy remains the core. Marianjoy has coordinated all of her equipment needs, including her specialized wheelchair, and has continually worked directly with her pediatrician, her neurologist, and even her school to make the transition smooth.

“The staff has been so gentle and kind to my family, answering questions and giving advice. Even the scheduling department works around my schedule to make her appointments convenient for me. And Dr. Keen, well she’s as solid as it gets. Her knowledge and expertise have kept my daughter alive.

“Even though the doctors were not hopeful, Cassie has made it past her 2nd birthday, and several more! We couldn’t be more thankful that we found Marianjoy. We know this is the right place for our daughter.”