With ventilators hard to find amid the spread of the coronavirus, families across the world worked together to find a ventilator for a child in Ecuador. Wilson, at age 18 months, is at an age one half of children with Centronuclear Myopathy don't get to see.
"At the beginning, they didn’t get any diagnosis, it was 5 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.
"These children are born very weak, a majority of them do not breathe spontaneously on their own. They cannot eat orally, cannot sit up on their own," said Alison Frase, Joshua Frase Foundation cofounder.
That means they need a ventilator, something that was in short supply here in the U.S. just a few weeks ago, but is nearly impossible to find in Ecuador. Frase's son, Joshua, was born with Myotubular Myopathy in 1995. He passed away 15 years later. And in his death, Alison started the Joshua Frase Foundation and an equipment exchange program.
"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 live in Ecuador. Now, she’s in Germany. She started CNM – Together Strong!, an association that helps families with centronuclear myopathies in Germany after her son was born with Myotubular Myopathy. Wilson’s parents got ahold of her after finding information online in Spanish — asking for help finding a ventilator so they could bring Wilson 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 Frase to see if there was anything she could do to 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 came from a family in Utah, the plug, connectors, and other parts from another family in Utah, and the humidifier from a family in Texas. They were shipped to Bilbao’s brother who still lives in Ecuador to take to the family.
"We couldn’t ship it to the hospital because they were feeling that it’s going to get lost at the hospital. Then where they live there’s no post office because they don’t live in the city they live outside the city, it’s very hard for the post to get packages to them," said Bilbao.
For Wilson’s parents, this gift is more than just a medical device.
"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.
