Baby Jose returns to Alberta nearly 30 years after life

Ahead of a weekend dedicated to showing gratitude, this is a story nearly 30 years in the making.

In the late 1990s, a family from central America travelled some 6,000 kilometres north, seeking a life-saving surgery for their young son.

They’ve now returned to say thank you to the community.

Baby Jose Moran Robles, born in Panama in 1996, has Down syndrome and was born with a life-threatening condition.

“He had a defect that was called atrioventricular septal defect,” lead surgeon Dr. Ivan Rebeyka told Global News in 2020.

Atrioventricular septal defect (AVSD) is a congenital heart condition from birth where there are holes in the walls between the heart’s chambers and abnormal formation of the valves.

“Basically, the central portion of the heart didn’t come together.”

Left untreated, over time AVSD stresses and can enlarge the heart, and may lead to pulmonary hypertension, heart rhythm abnormalities or heart failure.

When the life-saving surgery he needed was not available in Panama, the Robles family turned to Inclusion Alberta (formerly the Alberta Association for Community Living) for aid, after hearing it had helped another family near them.

The Edmonton organization advocates on behalf of children and adults with developmental disabilities.

“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,” said Bev Ray in 2020. She worked as a family support advocate at the time of the surgery.

Through the generosity of Edmontonians, the Robles family was able to come to the city in 1998 when Jose was 14-months-old, and the surgery was a success.

Jose and the Robles stayed for a few more weeks while the 14-month-old recovered. They returned to Panama and haven’t been to Edmonton since then…until now.

“I’m grateful to my Lord to allow us to come back here to this country that gave Jose a new life,” Jose’s mother, Sadia Robles, said via an interpreter on Friday.

“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 spending time with his family, making art, horseback riding, dancing and drumming in a marching band.

A decade ago, his family told Global News that Jose has 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.

The Robles family arrived in the city earlier this week.

They visited West Edmonton Mall, got a tour of the Ronald McDonald House where they stayed 28 years ago, and met with one of the doctors from Jose’s team.

“I was happy to see him, and I hugged him very warmly with a lot of love,” said Jose.

Bruce Uditsky was part of the Inclusion Alberta team, which at the time was named Alberta Association for Community Living, that helped bring the Robles to Edmonton in 1998.

“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,” said Uditsky, CEO of Meritus at Inclusion Alberta.

Though Uditsky says nearly 30 years later, there are still barriers for people with disabilities to get care.

“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.”

Global News spoke with the Robles’ in 2020 for an update on Jose and the rest of the family.

They told us how they have kept in contact with the people who helped bring them to Edmonton in 1998 and hoped to see them all again one day.

This trip made that possible; Sadia called it a ‘life goal’ for the family. The Robles say they will be forever grateful to the people of Edmonton 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.