Global News Edmonton has reported:

Jose Moran Robles and his family have returned to Edmonton nearly 30 years after the city helped bring him to Alberta for life-saving heart surgery. The family came from Panama in 1998, when Jose was 14 months old, after learning the surgery he needed was not available at home. His operation succeeded, and the family says the trip back is a chance to thank the community that helped them.

Jose was born in Panama in 1996 with Down syndrome and a life-threatening heart condition called atrioventricular septal defect, or AVSD. The congenital condition involves holes in the walls between the heart’s chambers and abnormal formation of its valves. “Basically, the central portion of the heart didn’t come together,” lead surgeon Dr. Ivan Rebeyka told Global News in 2020.

Without treatment, AVSD can place strain on the heart and cause it to enlarge over time. It may also lead to pulmonary hypertension, heart rhythm abnormalities or heart failure. When the needed operation could not be obtained in Panama, Jose’s family sought help from Inclusion Alberta, then called the Alberta Association for Community Living.

The Edmonton organization advocates for children and adults with developmental disabilities. The Robles family had heard it helped another family nearby, and contacted it to ask whether it could assist them in bringing Jose to Canada. “We received a call from the Robles family… I think he was about one year old at the time, asking if there was any way that we could help them bring their family, bring Jose, to Canada,” Bev Ray said in 2020. She was a family support advocate at the time of the surgery.

With support from Edmontonians, the family travelled roughly 6,000 kilometres north and arrived in Edmonton in 1998. Jose had the operation and stayed in the city with his family for several more weeks while he recovered. They then returned to Panama and had not visited Edmonton again until this week.

The family arrived earlier this week, ahead of a weekend dedicated to showing gratitude. They visited West Edmonton Mall, toured Ronald McDonald House, where they stayed 28 years ago, and met one of the doctors from Jose’s medical team. Jose said he was glad to see the doctor again. “I was happy to see him, and I hugged him very warmly with a lot of love,” he said.

Jose’s mother, Sadia Robles, spoke through an interpreter on Friday about returning to the city. “I’m grateful to my Lord to allow us to come back here to this country that gave Jose a new life,” she said. “We always wanted the people, the city, to know, to see that our fight from 29 years ago had good, positive results.”

Jose is now 30 and enjoys a full, healthy life with his family. He makes art, rides horses, dances and plays drums in a marching band. A decade ago, the family told Global News that he had also represented Panama in the Para Central American Games. “Given his conditions, he is very independent and has a lot of dreams and a lot of aspirations,” Sadia said.

Bruce Uditsky was part of the Alberta Association for Community Living team that helped the family come to Edmonton. He is now CEO of Meritus at Inclusion Alberta. Uditsky said the city came together to support Jose and his family, and reflected on seeing Jose thrive. “It’s literally amazing to see not just what Inclusion Alberta did at the time, but the entire city rallied around Jose and his family, and to see how he’s thriving, the good life that he’s living….To have contributed to that is actually a bit beyond my abilities to express,” he said.

Uditsky said people with disabilities still face barriers to health care, despite progress over nearly three decades. “Relatively speaking, we’ve made a lot of progress. We still have some work to do so that people with intellectual, developmental disabilities can have equivalent access to healthcare irrespective of the nature of their disability.”

The family spoke with Global News in 2020 about Jose and their lives, saying they had stayed in touch with people who helped bring them to Edmonton and hoped to see them all again. This visit made that reunion possible, fulfilling what Sadia described as a “life goal” for the family. The Robles family says it will remain grateful to Edmontonians for giving Jose a chance at life. “Our main goal to come back here to this city is to say thank you and to let them know that in this life, everything can be possible,” Sadia said.