Cranston resident Antonio Torres has battled epidermolysis bullosa since infancy, a disease that makes his skin incredibly sensitive. The condition is very rare, found in just one in every 50,000 people, and has a high mortality rate in young children.

Tony beat the odds, but not without tremendous difficulties. His 11 years have been filled with hospital stays and surgeries, and last year he was back at Hasbro, hands bound in bandages. His mom, Liane, was by his side to help him dress, watch TV or talk with friends on Facebook, but Tony wanted some independence. The GetWellNetwork gave him that independence.

The Maryland-based company, founded by cancer survivor Michael O’Neil, offers an interactive patient care system that kept Tony in touch with friends and engaged in his care, all with the use of his feet.

“It was very cool because, oftentimes, when Tony is in the hospital, basically I’m like his hands. Being in the hospital, having long, tedious days, it was really nice that with the whole GetWellNetwork idea, he could be doing stuff independently,” Liane said.

The first thing Tony did was post a Facebook status without his mom’s help.

“I think I said, ‘I’m posting my Facebook status with my toes.’ Let’s just say I got the most likes on it than I ever had in my life,” he said.

Tony added that being in the driver seat as a patient, and as a kid, made his stay at Hasbro exponentially better.

“This was a lot more interactive. They have all of this wonderful stuff on this little screen,” he said. “It really helped pass the time.”

Through the GetWellNetwork, Tony could use the Internet, control his television or talk to friends from Oak Lawn Elementary School, where he is a sixth grader. He could also access medical information, find out the status of prescriptions or learn more about diagnoses and other updates provided by his doctors. Medical updates will interrupt entertainment programs to let the patient know what kind of timeline they’re working with in terms of prescriptions or tests ordered, or when they can expect to see a doctor. In short, it is a desktop for patient care.

“Tony’s experience at Hasbro Children’s, he got to navigate around GetWell town, which we created for children. Our older patients have a very different look and feel,” O’Neil said. “We’ve highly personalized the application so it really feels like it’s just for me, and what I’m going through.”

The technology is in more than 100 health care facilities nationwide, accessible to roughly 20,000 beds. Over the past four years, GetWellNetwork has interacted with more than 10 million patients. O’Neil believes GetWell technology will explode in the future, as it is an investment in quality of patient service.

“The business case for patient engagement is a very measurable one. The hospital’s reimbursement is really being determined in how they perform,” he said, explaining that patient satisfaction is an important component in health care, and keeping patients informed and engaged in their own care can help them take better care of themselves once their hospital stay is over, reducing the chances of rehospitalization or complications.

“All of the organizations we’re involved with are becoming more accountable. It’s really important, from a health care system standpoint, we begin to help patients active in their care,” he continued. “We think that patient engagement is a critical component to population health improvement.”

O’Neil developed the GetWellNetwork concept after seeing the health care world from the patient perspective. A decade ago, he was studying graduate work in law and business as Georgetown, when he was diagnosed with non-Hodgkin’s lymphoma. He spent quite a bit of time at Johns Hopkins Hospital. While his medical outcome couldn’t have been better, O’Neil felt like he was in the dark when it came to his care.

“My experience from a patient and family standpoint was certainly less than wonderful,” he said.

At that point, O’Neil began to think of a care delivery system that would help patients to feel “that care is being done with them and not to them.”

Years later, in 2005, that concept was resurrected. O’Neil was back in the hospital for the birth of his twin girls, one of whom died from a diaphragmatic hernia.

“It was one of these life-defining and life-altering moments. It still felt like I was on the outside looking in,” he said.

O’Neil was ready to change that and started the GetWellNetwork.

“It’s about putting the patient in control and making sure their feedback goes to the staff, so when I’m confused, anxious, in pain, it would have been a completely different feeling of empowerment. It’s preparing me better to go home and be a better patient,” he said.

O’Neil says there is still a “lifetime of work” to do to make the patient experience a more positive one, but he is thrilled that the GetWellNetwork is touching the lives of people like Tony and Liane. The product improves because of their input as well, as Tony often e-mails tips or ideas to O’Neil.

“He, to no surprise, not only has wisdom and perspective beyond his years, but he’s also a technology whiz kid. He’s always pounding me on e-mail,” O’Neil said.

Tony has come up with ideas for Apple applications and GetWellNetwork features he would like to see added – ideas that O’Neil takes seriously and has worked to implement.

“Some of the ideas I gave to the GetWellNetwork were from my own personal experiences,” Tony said, adding, for example, “I wasn’t able to call the nurse. I was thinking about asking Michael if he could implement new push buttons where you could alert the nurse.”

The pair met after a chance encounter by Liane. She was driving a cab, transporting a woman to the hospital, and the woman turned out to be a representative of the GetWellNetwork. She told Liane where she worked, and Liane shared Tony’s story. She also shared with the woman a photograph of Tony using the network with his feet, and the image was later sent to O’Neil.

“It’s truly ironic that she got into my taxi cab and we happened to have this conversation; her jaw just about dropped,” Liane said. “It really made an impact on her and the founder of her company was really impressed with Antonio and his situation.”

O’Neil made a point of meeting Tony, a young man who validated his company’s mission. Tony and Liane were then invited to Florida for the 2012 GetConnected patient conference. Tony, at just 11 years old, spoke in front of a crowd of more than 300 people, delivering a speech that O’Neil said was an “emotional charge” for everyone in the company and industry.

“I was a little nervous, but I was mostly excited. I was really excited about the opportunity to go up on the stage and talk about EB and how the GetWellNetwork impacted my life,” Tony said. “The more people that know about it, the more chances there are for a cure being found.”

Finding a cure is what Tony hopes to dedicate his life to. He serves as a spokesperson for Hasbro’s Children’s Miracle Network, helps with the RadioThon and hopes to become a geneticist so he can find a cure for EB. Because of his condition, his skin can often appear similar to a burn, and the process for bandaging can take hours. He can’t play contact sports and has to be careful about heavy lifting or overburdening his hands.

After surgery and medication, though, Tony’s condition is under control.

“After the surgery its a long process of healing and therapy, but they are doing a lot better,” he said of his hands. “It’s a lot of work.”

Most importantly, Liane said, they stay positive and push forward on building awareness for epidermolysis bullosa.

“It’s a very precarious condition to have, but we do the best with what we have,” she said. “When he was born, the prognosis wasn’t very good, but here we are, 11 years later, and we’re still plugging away.”

For more information visit www.getwellnetwork.com. The Torres family is planning a Motorcycle Run to benefit Antonio and help pay for out-of-state surgeries. Stay tuned to the Herald for more information.