It’s an incredible story about survival and the willingness of Edmontonians to help people in need.
In Part 1 of our three-part series “Saving Baby Jose,” we go back to the 1990s, when we were first introduced to a baby with Down syndrome in need of life-saving surgery.
Jose Moran Robles was born in Panama in 1996 with a life-threatening medical condition.
“He had a defect that was called atrial ventricular septal defect,” lead surgeon Dr. Ivan Rebeyka explained. “Basically, the central portion the heart didn’t come together.”
With two holes in his heart and surgery not available in Panama, the clock was winding down for Jose to get the treatment he needed.
Desperate, the Robles family turned their attention up north — far north — to Edmonton, Alta., and an organization that had helped another family near them.
“We received a call from the Robles family… I think he was about one year old at the time, asking if there was anyway that we could help them bring their family, bring Jose, to Canada,” said Bev Ray, who worked as a family support advocate at the time.
Without hesitation, the organization was on board. It was then Ray’s task to drum up support and get the family here.
“There was not one place I ever called that turned down or was not interested in being involved,” Ray said.
Word spread quickly about baby Jose. The community was quick to step in for flight costs, housing, clothing and the surgery itself.
After two days of surgeries, the operation was a success.
“Back 20 years ago, it was a much bigger operation, even more so in someone like him that was over a year of age,” Rebeyka said.
The odds were against baby Jose, but the generosity of Edmontonians overwhelmed them.
“I don’t think about the costs,” Rebeyka said. “The opportunity to repair somebody’s heart is what I’m supposed to be doing.”
“When it comes to family, there’s no borders. It doesn’t matter where you live, there’s no borders or restrictions,” Ray said. “Our children are our children and I embrace them fully as part of my family.”
Now 23 years old, Jose enjoys spending time with his family and hardly shies away from life.
“He’s a very active boy, he plays the drums, he likes to swim, he rides horses he plays a lot of sports,” Jose’s older brother Ricky Robles said.
He has also represented Panama in the Para Central American Games and traveled to South Korea for a music and art festival.
“It’s something that fills you. After all that we went through before the surgery, and then to see afterward how he has adapted socially and culturally. It’s something that fills us with satisfaction and all the family,” Jose’s mother Sadia Robles explained.
Seeing Jose all grown up means a lot for those who played a hand in bringing him to Edmonton for life-saving surgery more than 20 years ago.
“It was a team involved, there’s no doubt about that,” lead surgeon for Jose’s operation, Dr. Ivan Rebeyka, said.
“I consider him a part of our family, so seeing him grow up, it’s like watching a nephew or a family member, and just wishing you be there at different times to experience those things,” Ray said.
Ray and her children, including one with down syndrome, look forward to visiting the Robles family.
“I think about it all the time and they send messages. One of these days…I’ve just got to deal with that on my bucket list. It would be wonderful to be able to go see them,” said Ray.
Half a world away, the Robles family has one message they want to share.
Jose wasn’t the first child the organization Inclusion Alberta (formerly the Alberta Association for Community Living) helped.
“In 1995, a young man in Calgary named Terry Urquhart came to our attention. He was 16 or 17 years of age and in need of heart and lung transplant because as a child with Down syndrome, he wasn’t provided the heart operation as an infant,” Inclusion Alberta CEO Bruce Uditsky said.
As the head of an organization that advocates on behalf of children and adults with developmental disabilities, he wanted to help.
Uditsky says Terry wasn’t getting the treatment that other children would have.
“He was in effect dying but was being denied access to the transplant program because he had Down syndrome,” Uditsky explained.
“We mounted a very intensive extensive public campaign, petitions lobbied, had the issued debated in the legislature. Worked with the physicians…had a tremendous amount of public support,” Uditsky said.
In the end, the campaign was a success.
“The transplant rules were altered in order the allow someone with Down syndrome to be eligible the same way someone else would be eligible, not to be more eligible but if their conditions met the criteria they would be on the list, ” Uditsky said.
It was too late for Terry. Not long after the rules changed, he passed away, unable to get the operation he needed in time.
His legacy made it possible for baby Jose to get on a waiting list and allow future generations to get the life-saving surgeries they need.
“We can’t rest because we’ve made a difference in one child’s life. There’s a child that will show up here tomorrow with a desperate family who needs our help and we have to be ready to respond,” Uditsky added.
Since the organization helped Jose, things have changed in other countries. Uditsky says more life-saving operations are now being offered.
The change has lead to Inclusion Alberta working with more people in their own backyard.