Posts tagged COVID-9
Sharing the Journey with Jeneva: Samantha McGovern COVID-19 Thoughts
Samantha and Little Lobbyists Josephine

Samantha and Little Lobbyists Josephine

Samantha McGovern lives in Springfield, Virginia, with her daughter Josephine and her husband. Samatha is a member of Little Lobbyists. 

Tell me about your family’s medical needs.
We’re a pretty unique family of three: each of us has medical needs. Two years ago, Josephine’s dad was treated for Stage IV Hodgkin's Lymphoma, and we’re thankful he’s in remission. Almost a year ago, I was diagnosed with Stage III Anaplastic Astrocytoma (a type of brain cancer), and I’m at high risk for seizures now. Even though I’m doing well, it’s not safe for me to be the sole caregiver for our daughter Josephine. 

Josephine was a micro-preemie, born at exactly 24 weeks gestation, 1 lb., 12 oz., and 12 inches long. She was the size of six pieces of butter. As a result of her early birth Josephine had poor lung development. Her initial hospitalization was 13 months, and included heavy sedation. At the time of discharge, she was vent dependent, which resulted in delays in walking, eating, and speech. 

Today, Josephine uses a trach so she can sleep and breath safely. She has many specialists and requires a nurse to get to school. She eats by mouth now, but still meets her fluid needs via her g-tube. She speaks with a communication device, the Accent 800. 

My favorite part of Josephine’s medical needs is that they are manageable. Often, people think less of her because of them, but, in reality, she recognizes their doubts and manipulates them like a typical four year old!

Josephine riding her bike.

Josephine riding her bike.

What steps are you taking to protect Josephine and your family during the pandemic? 
For the most part, we’re living a "normal" winter life. After Josephine was initially discharged from the hospital, February 2017, we kept her house-bound every year during cold and flu season, and we still do, except for therapy and medical appointments. Our therapists always cancel appointments if they’re sick with a virus. It’s important to limit Josephine’s exposure to germs because she’s still growing new lung tissue, which is her only real “cure.” Children grow lung tissue until they’re seven years old. 

 How have fears of the coronavirus changed your family routines? 
For the most part our routines have been the same. The hardest part has been that the weather is nice. Josephine wants to be outside to playing. We feel safer inside than outside because we must keep her away from other young kids: they aren’t great about cough or clean hand practices. It makes me sad. But it's been our routine for three years. 

 What have our elected officials done well in terms of coronavirus response? 
I read The New York Times, The Washington Post, and updates from the CDC as my primary sources of information, as well as NPR. I look for interviews with medical professionals, and state and county leaders. I use Facebook to watch our Governor, Ralph Northam. A couple of nights a week, I watch the daily presidential press conference, but mostly to hear medical guidance and CDC suggestions.  

 Our county public schools send out communication via email. Some of it’s helpful, and some of it’s more along the lines of, they will have more information soon. Our schools also use text alerts to direct us to emails with important information.  

What do you think our elected officials could do better? 
At first, I was really happy with the way Virginia State and Fairfax County governments were handling the problem. As time has gone on, my feelings have really varied. For example, I feel safer at a well-managed, clean, evenly-spaced farmers market then I do in a grocery store. There is a vendor there that makes food just for my daughter. But it was closed without notice, even though the business was seriously managing itself correctly. 

I wish more information was shared about hospitals’ approaches to the coronavirus. I’ve learned about back-up bed units for Virginia, but I’d like to know what hospital units are safest for a reason unrelated to COVID-19. For example, it’s possible for my daughter to rip out her g-tube. She would have to go to a hospital for that to be fixed. She won’t let us do it at home. In that event, I wouldn’t be sure how to handle it, or where to go. 

 Some people still say coronavirus fears are over the top--what's your response? 
Washing your hands and staying home when you’re sick really does make a difference. We’ve done this since the day Josephine was born. We clean our house well. We even had amazing masks on-hand because if we’ve been sick, masks have worked to prevent the spread of viruses!

I regularly reach out and give support to fellow preemie moms, especially micro-preemie moms, because we’re so well-trained when it comes to germ management. I’m not subtle about correcting people who don’t get it. I’ve even corrected doctors, nurses, and respiratory therapists who’ve made a mistake, like not using hand sanitizer before touching Josephine. 

In these troubling times, what gives you hope? 
What gives me hope in this moment? That at the end of it, people may have a better understanding of what my regular life looks like. They may be more likely to video chat with me when I have to telework. They may find creative ways to engage with Josephine during cold and flu season. And most importantly? They may realize that if they’re sick with anything, even a “basic” cold, that they should stay home. 


Jeneva and Robert Stone on a recent visit to the Senate Office Buildings.

Jeneva and Robert Stone on a recent visit to the Senate Office Buildings.

We hope you enjoyed this installment of Sharing the Journey with Jeneva, a new feature on our Little Lobbyists blog. Through these interviews we will share the advocacy journeys of caregiver/parents and disability self-advocates, inspiring us to forge ahead together. Send an email to Jeneva if you have any questions you'd like to see, or if you'd like to be interviewed for a future installment of this series! 

Jeneva Stone is the manager of the Little Lobbyists blog. She's worked as a teacher, a government editor, and a Hill staffer. Jeneva is also a writer, with numerous publications in poetry and nonfiction. She lives with her son Robert, who has complex medical needs and disabilities, her husband Roger, their two cats and a dog in Bethesda, Maryland. Her second child, Edith, is currently a student at Middlebury College. 

Novel Coronavirus Response Must Include Affordable, Equal Access to Treatment for ALL (by Yasmin Canales)

Last week Little Lobbyists joined Senator Van Hollen, Representatives Schkowsky, DeLauro and Doggett, Moms Rising and Lower Drug Prices Now for a press conference on Capitol Hill to demand that any vaccine or treatment developed for the novel coronavirus be affordable and accessible to ALL Americans. Little Lobbyists Yasmin Canales spoke on our behalf, her speech is below:

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My name is Yasmin Canales and I am member of Little Lobbyists, an organization who advocates for kids with complex medical needs and disabilities. I am a high school senior, just accepted into my top 2 choices for college. I love swimming, work as a lifeguard, and am a youth group leader with a passion for sharing my faith. I was also born with a genetic disease called Cystic Fibrosis, which affects all my organs, but especially my respiratory and digestive systems. Since birth, I have had over 30 hospitalizations for weeks at a time as well as 15 surgeries. I take 21 different medications, including over 35 pills daily, and 2-4 hours of intense respiratory therapies. 

The medicines I need to stay alive cost over $23,000 for one month. Many of these drugs are so expensive because the companies that make them have a monopoly, allowing them to set prices as high as they want. It is extremely frustrating to know our public tax dollars fund much of the research for these medicines, but we can’t afford them because private pharmaceutical corporations are allowed to inflate prices to pad their profits. 

Regarding the outbreak of the novel coronavirus, COVID-19, the administration has said they won't promise a vaccine will be available or affordable for everyone, because pharmaceutical companies need to make money. But 27 million Americans are uninsured, 34 million working people have no paid sick days, and we are in contact with one another every day. Affordable, equal access to ALL for any treatment or vaccine for the novel coronavirus is of the utmost importance to me. My compromised immune system and my lowered lung function will not be able to fight off this novel virus, and I might die if access is denied to myself or those around me. When the virus spreads into my community, my life and the lives of people like myself and many other children with complex medical needs, is on the line.

The availability of a future vaccine or treatment for this global pandemic should not be in question. There is currently a provision in the Affordable Care Act mandating all federally recommended vaccines be provided at no cost. Public taxpayer funds have already gone into coronavirus research - we’ve already paid for it and we should be guaranteed affordable access. 

There are things more important than profits, like our health. I want to thank Senator Van Hollen and Representatives Schkowsky and Doggett for holding the Administration accountable by saying no monopoly for coronavirus drugs. The safety of every American, of every person we love, in the face of this global pandemic should be everyone's top priority - especially our government's.

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