Hoosier in Need: Pamela Jacobs - Victim of this Administration

 Hoosier in Need: Pamela Jacobs 

Victim of this Administration

Image Credit: New York Times

To contribute to Pamela's GoFundMe, the funds of which are used to treat her son's Duchennes Muscular Dystrophy and keep them housed, please click HERE.

I first met Pamela, who introduced herself as 'Pastor Pam' - on that first day of 50501 protests in downtown Indianapolis. It was freezing. It was raining. It was a miserable winter day.

Author Tom Robbins once wrote that, "Weather should either be celebrated or ignored." 

That day was testing the boundaries of his wisdom.

Pamela greeted me with an enthusiastic smile anyway, despite the weather.

Her and I were bundled up against the cold, hands in our pockets and fidgeting outside the Statehouse to stay warm as we talked. But despite the weather, we were  there that day because we believed that something was deeply wrong with the first weeks of the Trump presidency. 

I had read news articles for days from the Atlantic to the Associated Press about the awful consequences of Trump's reckless funding halts. That, among a deluge of other Executive Orders which stretched the powers of the executive branch to the point of snapping, had motivated me to organize the protest in the first place.

Its easy to devolve into partisan politics, to make sweeping generalizations of people, to reduce the infinite complexities of peoples' lives down into single statements or terms.

Its a lot more difficult to do that when you can see the person, and see their pain.

And as Pastor Pam and I talked, having arrived early to set up, I came to know her story. I would like to share it with you. And to ask for your help.

Because her story is heartbreaking. 

And there are many, many more like her.

Trump Freezes Funding

As part of his aggressive actions during the first weeks of his presidency, Trump issued a torrent of executive orders, one of the most devastating of which was a freeze on all federal grants and loans.

Seemingly caught in the crossfire and poor execution of this EO, NBC reported that Medicaid payment systems were down and many couldn't access funds. Medicaid provides insurance to over 70 million low-income and disabled Americans. 

The right often tries to paint them as geniuses gaming the system. They try to justify their cruelty to their fellow man by creating a sense of justification - that they're clearing out bad actors. They don't want to talk about the innocents caught in the crossfire. And now, with the end of Pandemic era enrollment protections and Medicaid under threat by this Congress, people like Pamela are in dire situations.

A Mother & Her Son

Pamela & Jonah

Pamela was raised by a single mother, who worked hard to provide for her family. Pamela had her own challenges as well, suffering a brain injury which had lasting consequences. Despite these challenges, she got a degree in nursing. And had a son, named Jonah. 

Pamela tells me that Jonah's name came from the Martina McBride song, 'God's Will'.

Jonah was born with Duchennes Muscular Dystrophy (DMD). DMD is a rare, inherited genetic disorder that causes progressive loss of muscles and results in significant physical disabilities. Symptoms begin to appear around ages 3 - 5, and there is no cure. 

The average lifespan of individuals with DMD is 30 years, and Pamela is doing everything she can to make sure Jonah is as taken care of as he can be. 

In fact, once he was diagnosed, she had to quit her job to provide full time care for him. She became a PSA - Personal Support Assistant. She became a care coordinator and an advocate for the disabled and the family members who need assistance and knowledge in how to care for their loved ones.

She fought for her family, and for the families of others.

"I'm a Pastor." She tells me, "My whole mission is to spread love. Love they neighbor is the foundation that I build my faith on."

Jonah

More than anything, Pamela fought for her son. 

"He's happy and adventurous." she shares, "He has an infectious laugh. His personality is nothing but joy. 

He loves with his whole heart. He loves cooking and watching me cook, music, and anything outside.

He deserves the best."

Pamela tells me that Jonah has had a life of fighting for what others take for granted. He had to fight to stay in school. He had to fight to be included. He has to fight for a scrape of anything.

"He does so very humbly." she says proudly. 

"My biggest dream for Jonah is for him to know he is loved and valued. That he lives a full life, even if its a short one."

When I ask her what she wants, she very humbly replies, "Love and peace. To have people around me that understand and won't leave me behind."

Something broke in me, at the concrete and specific story of Pamela and her son. They aren't numbers in a database. They aren't some devious tricksters. They're people, lovely people.

People who rely on help which is now being denied to them or under threat of complete destruction.

"Without care and treatment, my son will die."

While a lot of Jonah's care was paid for out of pocket, his biggest contributor was the Muscular Dystrophy Family Foundation (MDFF). Due to the Trump freezes, this is no longer available to Jonah.

His health insurance is Medicaid, which as ABC reported has been thrown into disarray and is under threat of complete removal. 

Later, when I was following up with Pam about her story, she had to step away out of distress. The unknowns and weight of the looming cuts were overwhelming.

"We are facing homelessness." she tells me. 

Her income primarily comes from Medicaid because she is Jonah's full time caregiver.

"The freeze and future cuts will destroy us. There will be no income. No health insurance. Without care and treatment my son will die."

Jonah needs 24/7 care, and needs a ventilator which has a solar generator so it stays active.

Providing that full time care prevents Pamela from being able to work, and the costs of hiring a full time caregiver outweigh the resources available to them even if she were working.

"I am the care system he needs." she says.

"The assistance fund helps with infusions. The Muscular Dystrophy Association helps with clinics. The MDFF helps with some equipment, but most things are out of pocket. How will I pay rent? How will I pay for anything?

I don't know. I have no clue what we are going to do." she laments. 

What Trump Took

- Durable medical equipment was cut

- Hygiene supplies were cut off

- Medication coverage was reduced

- Home health care (what allows Pamela to survive) was gutted

She tells me that in the confusion, Medicaid didn't pay out regardless of the clarifications. She is still waiting for it to resume. 

Meanwhile, her rent is due in four days.

And the hits don't stop coming. As I'm writing this, Pamela messages me to tell me that one of the things which was caught in the cuts was Exondys 51 (eterplirsen), the primary drug to treat Jonah's DMD.

What Can We Do?

Pastor Pam is in dire need. She has set up a GoFundMe for her son, and I beg you to contribute whatever you can. 

In this instance, it is quite literally life and death for this Hoosier family.

I met them, they aren't a link on the internet or some fake news. They're real people, beautiful people - who deserve exactly what they wish for:

Love and kindness. Compassion and mercy.

To contribute to Jonah's GoFundMe, click HERE.