Families worldwide worked together to help an 18-month-old boy named Wilson in Ecuador with Centronuclear Myopathy find a ventilator, as finding ventilators worldwide have been scarce due to the coronavirus.
“At the beginning, they didn’t get any diagnosis, it was five months until they got the diagnosis. The first months it was very uncertain what was going to happen. They had no idea, and because of the disease is very, very uncommon and rare, the doctor had no idea,” said Jen Bilbao, translator for the family.
Most children who are diagnosed with Centronuclear Myopathy are born so weak that they cannot breathe on their own, eat on their own, or sit up on their own.
In order to live on their own, this means these children need a ventilator. Although ventilators were in short supply in the U.S. up until a few weeks ago, they are nearly impossible to find in Ecuador.
“That’s the first family we have in Ecuador because normally the children there with this kind of diseases, unfortunately they don’t survive because there is not equipment,” said Bilbao. “It’s very, very hard for them to go home, so there’s little that they can do for them.”
Bilbao used to reside in Ecuador, but now she lives in Germany. She started CNM Together Strong!, an association that assists families with centronuclear myopathies.
She started the organization after she had a son born with Myotubular Myopathy. Wilson’s family got in touch with her after finding information about the condition online in Spanish, asking for assistance in finding a ventilator so they could bring their son home.
“She was very desperate because she thought she was going to be at the hospital her whole life,” Bilbao said, translating for Wilson’s mom.
Bilbao reached out to Alison Frase, the cofounder of the Joshua Frase Foundation, to see if she could help.
“I was scrambling making posts on our private groups looking for the equipment to piecemeal this ventilator together,” said Frase. “I knew I had a ventilator from, unfortunately, a child, actually a young man, that had passed this year, and I reached out to that mom, and she said absolutely you can have it.”
The ventilator was donated from a family in Utah, the connectors, plug, and other parts came from another Utah family, and the dehumidifier came from a Texas family.
The pieces were shipped to Bilbao’s brother, who still lives in Ecuador, to deliver to the family since it is difficult to get packages to them from where Wilson’s family lives.
For Wilson’s family, the ventilator is more than just a medical device: it is a gift.
“They felt really like they could breathe again. So it was not only a breath for their child, but a breath for them because they didn’t know what to do. And to know that somebody was going to help, it was very peaceful,” said Bilbao.