Two ordinary mums from Louisiana with two very special children share a deeply personal cause.
And while Jessica Michot is a Democrat and Angela Lorio is a Republican who voted for Donald Trump, they’re united in a fight that transcends politics.
“I’m a mum who wants to see the right thing being done, not just for my child, but … for so many that cannot speak up for themselves,” Ms Lorio said about their fight against cuts to American health care.
She and Ms Michot run Trach Mommas of Louisiana, a group that advocates for families and their children who require tracheostomy tubes to breathe.
Their boys, Ms Lorio’s John Paul and Ms Michot’s Gabriel, were born at 27 weeks, and require trachs and full-time nursing.
“You have this child you’re fighting for and this child you would give your everything for,” Ms Michot said.
“You’re barely holding on yourself but you’re holding on to help them survive.”
Without Medicaid, it’s ‘institutionalisation or death’
The Trach Mommas are in a frightening limbo after several failed Republican efforts to repeal and replace Barack Obama’s Affordable Care Act, also known as Obamacare, and associated cuts to publicly funded Medicaid.
Home nursing is Medicaid-funded, and without it the boys’ lives could be threatened, along with their ability to live at home.
“Financially, we would not be able to afford it,” Ms Michot said about Gabriel’s home nursing.
“It would very much come down to institutionalisation or death.
“I’m not saying the next day he would die from it but I don’t think people understand the impact that this would have — to cause not only him but thousands and thousands and thousands of people with disabilities to die over time due to a lack of services.”
Gabriel’s identical twin brother Michael died when he was one year old after a series of seizures left him blind and without brain function. Much of Ms Michot’s life since has been about keeping Gabriel alive.
She was initially told her insurance wouldn’t cover home help and if the babies survived they would have to go into a nursing home.
“I said, ‘so, you’re telling me if my kids survived I don’t even get to take them home?'” she said, wiping away tears.
A Medicaid waiver, however, which allowed the family to access home nursing despite being above the income threshold, came to the rescue.
“I cried for days. I cried for days with relief,” she said.
Now almost five, Gabriel has developmental delays and still requires a trach and a feeding tube. Republican plans to cut Medicaid would be a disaster for the family.
Trach Mommas’ senator refused to see them
Ms Lorio is also completely reliant on Medicaid. She had no insurance when John Paul was born and he also still requires full-time nursing.
“We would have to pay for doctor visits, durable medical equipment, home nursing, medical supplies. There’s no way we can afford that,” she said.
“We’d quickly go through that and would have to declare bankruptcy and I don’t know what after that.”
The women were recently joined by dozens of other Trach Mommas and their children on a bus trip to Washington DC, where they attempted to meet with their Senate representative. He refused to see them. They were given a few short minutes with a staffer.
They’re still pushing.
“It doesn’t matter what it’s called,” Ms Lorio said.
“It doesn’t matter if it’s Obamacare, Trumpcare, the Affordable Care Act — [we just need] something that works, so that those who are in need get what they need to stay alive.”
Donald Trump is continuing to pressure Senate majority leader Mitch McConnell to repeal and replace Obamacare.
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