A Rare Mom's Three Days of Fame

When I ended my last entry, the world had just shut down for two weeks to "stop the spread" of CoronaVirus/Covid 19. Many have differing opinions on this - opinions I am not open to arguing or debating. I have strong feelings, as a mother of two boys with chronic, life-threatening conditions. And just like I know that no one can change my feelings on this, I am not going to try to change anyone else's feelings on it - and honestly at this time - I see no point in debating it.

We brought our son home for the remainder of second semester of freshman year. and part of first semester sophomore year. When campus opened he was so ready to go back. There was talk of vaccines being available soon. Back on campus these 18-22 year old young adults were embracing their freedom again. For our son, this brought with it tremendous risks and he made the very hard and mature decision to return home until he was fully vaccinated.

As vaccines came out there were procedures in place that said people with certain medical conditions, certain risks or certain ages had priority in getting the vaccine. Each state determined these regulations on a state by state basis. Also at play here was a time element, once a vial was open (and a vial gave us 4-5 doses) it needed to be used in about 3 hours (there was a specific time, I am not remembering these details).

What was happening was that in our state and reportedly in others, people would sign up according to their priority, but at the end of the day there would be vials left open with some medication left that needed to be used or disposed of. People at many locations were just calling people they knew - with no thinking of prerequisites for the vaccine at that time - to rush in and get it before they expired. It sounds great to those hearing this - because we are not wasting the vaccines. But think of my college student, who desperately needed the vaccine to get back to living life but did not check the right boxes, being passed over for people who knew the right people or were at the right place at the right time.

I called our local media and spoke to them, pleading that we also have lists for how to use those extra vaccines at the end of the day. Well, my story aired the same day as a prominent person in our area happened to get a vaccine though someone he knew. CNN got a hold of this story and within a week I was contacted by them and asked to share my story on a national platform, by asking President Biden my question in his first appearance with a public audience - his Town Hall that would happen the following week.

https://www.cnn.com/politics/live-news/joe-biden-town-hall-02-16-21/index.html

The four of us were all in attendance and as you can see in the video it was the most nervous I have ever been. I was the third question of the evening and while, again, not commenting on his politics, I believe the President answered with compassion and empathy of a parent who saw another parent doing all that I could to protect my child. It was a father who had watched his children suffer, speaking to a mother who was watching her child suffer and doing all I could to prevent further suffering for him and others in similar situations.

https://www.whitehouse.gov/briefing-room/speeches-remarks/2021/02/17/remarks-by-president-biden-in-a-cnn-town-hall-with-anderson-cooper/

https://www.washingtonpost.com/health/2021/02/26/covid-vaccine-who-should-go-first/

Ultimately, I did not speak more with President Biden that day, but was in contact with The Oval Office and members of the White House Covid-19 Response team and people who made high level decision in our state. I was featured in Newsweek, People, Washington Post and all the local news stations within a week. My son did get the vaccine, but not through special treatment - by someone calling me with extra at the end of the day - the way I was asking it be handled. I never went back to news stations to update as after three days of the spotlight our family was exhausted and done.

I went on to work with NORD and the FDA to ensure that future wording for vaccine determination included wording so that those with rare diseases could be included in high priority categories. This new found and short lived fame thrust me further into advocacy and has me where I am today - volunteering for four rare disease organizations and doing all I can to spread awareness, educate people about rare disease and connect those with rare diseases with resources that can help them.

As always, reach out to me for more information, to find out how to get connected if you have a rare disease or are caregiver for someone with a rare disease or how you can be part of our rare disease community.