ASHLAND — “Cai's Journey,” as his mother calls it, began when he was just 21⁄2 months old, and it’s been a bumpy road, full of pain but also  great strength and endurance.

One morning about six years ago, Shanna Gibbs Helms, 37, of Ashland, woke up to find her infant son, Cai, had a fever. She took him to the doctor, who said Cai had a stomach virus. She took him home, and later that day she found a few purple spots on his forehead and stomach. Worried, she took him to the hospital.

By the time they arrived at the hospital, her son was covered in a purple rash and was experiencing severe respiratory distress.

“We didn’t know what it was, and it was just so fast,” Helms said.

Doctors then told Helms that her son had bacterial meningitis, an infectious disease that is usually severe and can lead to serious complications, such as brain damage, hearing loss and learning disabilities.

“They didn’t think he would make it through the night,” Helms said. “They put us in one of the (hospital) family rooms. That’s how bad it was.”

Bacteria was spreading through Cai’s small frame, and each moment was critical. The doctor and nurses were surprised he survived the night, Helms said. Her son was put into a medically-induced coma for about 2 weeks while he recovered, putting him even more at risk of brain damage that would result in mental disability.

 “He’s a fighter. He has such a strong determination to stay with us,” said Pat Gibbs, Helms’ mother.

 Helms’ son did not experience brain damage from the infection or induced coma, but he did, however, experience lasting physical complications. The bacteria in Cai’s system caused hemorrhaging from the inside out, causing tissue damage on his legs and arms.

“The doctor said his body was trying to push (bacteria) away from his internal organs,” Helm said.

Because of the tissue damage, Cai has undergone several skin graph surgeries at the Shriners’ Hospital for Children in Lexington, leaving scars on his still-small arms and legs.

Unknown to Helms after her son’s initial recovery from meningitis, the infection also affected Cai’s bones. X-rays showed all of the bone growth plates in his legs had been affected by the bacteria, causing deformities in his hips and one of his knees to become contracted and unable to bend.

“From step to step, no one told us that all this stuff — orthopedic problems — was possible,” she said.

Last year, when he was in kindergarten, mobility became painful and difficult for Cai. He used a wheelchair to move from classroom to classroom, but still played hard during recess. Although he was energetic, his pain was increasing, and Helms knew something had to be done.

Seeking to fix her son’s growth and bone issues, Helms looked to the doctors at the Shriners’ hospital. Two doctors told her the best thing for her son would be a knee fusion and double amputation above the knees.

“When they both told me he was not a good candidate for bone lengthening and said it wouldn’t help his hips anyway, I lost hope,” Helms said.

She planned to go through with the amputation, but did not immediately agree to it. She began to do  research online, reading blogs written by other parents in similar situations, and she came across mention of Dr. Dror Paley of the Paley Advanced Limb Lengthening Institute in West Palm Beach, Fla. She found that Paley is nationally and internationally known to be the most experienced surgeon in limb lengthening and deformity correction and decided to go to him for a third opinion.

“From what the other doctors told me, I didn’t have much hope, but I felt like I had to exhaust every possibility,” Helms said.

To her relief, Paley said amputating her son’s legs would be absurd. Others who worked at the institution seemed stunned she had been told amputation was their only option, she said. Paley told her about surgical procedures and equipment that could correct Cai’s bone and growth problems. Helms considered her options and decided Paley’s surgical plan was the best option for her son. Cai’s first surgery was scheduled to be in January.

The 6-year-old underwent the surgery as scheduled. The surgeon had to break the femur in Cai’s left leg in two places, the tibia in one, and attach an external fixater with 13 large pins. The pins had to be turned a few degrees each day, pulling his bones apart slowly and leaving room for new bone to grow. This process, Helms said, was excruciatingly painful for her son.

“It was just excruciating for him. He would literally cry and yell for God to help him ... I thought I had made a mistake at first, having them do the surgery,” she said.

Helms stayed in Florida for almost four months while her son recovered and went to daily physical therapy sessions. The two of them returned to their home in Ashland about two months ago, and although Cai still has to do physical therapy every day, he has gained 6 inches in his leg since the surgery. In August they will return to Florida for the same procedure to be done on the boy's other leg.

 Now that Helms has found a solution to the problems that have plagued her son since he was an infant, she wants to spread awareness, not just of the threat of bacterial meningitis, but also of the opportunities available to help overcome its lasting effects.

 “I can't stress enough how severe meningitis can be,” Helms said.

 She said everyone should be aware of the warning signs of meningitis because each minute counts and can lead to more tissue and bone loss. Meningitis comes with flu-like symptoms, but a rash is a warning sign of the more serious condition. A high heart rate is also a warning sign of infection, Helms said.

 If a child is diagnosed with meningitis and experiences lasting effects such as bone and growth problems, parents should be aware that they have options, she said. Amputation may be the right solution for someone else, but Helms knew it was not the right solution for her son. Parents shoud know amputation is not the only solution, and orthopedic surgeons may be able to provide other options, she said.

 Facing the cost of another surgery and another extended stay away from home, Helms is planning fundraisers. Her insurance has covered the cost of her son's surgeries, however, it cannot cover the cost of their stay near the institution and visits from her husband and two other children. Her savings has been depleted, she said, and caring for Cai does not allow her to work. She is planning a golf scramble in July.

 After all of the challenges her family has faced, she said she can still see the good things that have resulted from them. While she was on the beach with her son a few months ago, a man told Helms that he was going through a difficult time in his life, but after seeing Cai still so energetic even with pins in his leg, it gave him hope.

 “To see that my 6-year-old child can inspire people and help them get through challenges, it’s amazing. He's my source of strength,” she said.

 SHANNON MILLER can be reached at smiller@dailyindependent.com and (606) 326-2657.