Who is Gina Hessburg and, better yet, who is Rafael?
Gina Hessburg is an art buyer and producer (http://www.ginahessburg.com/). After suffering from multiple Optic Neuritis (ON) attacks with the source undiagnosed. that took her to multiple clinics, including the Mayo Clinic. She was not responsive to steroids, so doctors differ on the diagnosed of Chronic Relapsing Inflamitory Optic Neuropathy , or CRION. She tested negative for the MOG Antibody as well as every other known cause of ON attacks. With no sure way to stop the continued degrading of her vision, Gina is determined to stop it from ever happening again and save her vision. In the process, she will help many more.
After several months isolated by COVID-19 social distancing, Rafael, a novelty toy from the past that she found in a drawer, entered into her life. With her third ON attack, Gina needed a project to focus on and was looking for ways to help push for more research in ON and help a community in need. A few puffs of air and a little imagination led to a pretty remarkable series of opportunities that will surely have a positive impact on the ON community!
Gina, along with the support of her advertising community, is self-publishing a book called Blowing UP about her life with Rafael, with $5 of each book sale going towards ON research and support. She has dedicated a portion of the funds raised to The MOG Project. Read all about Rafael and Gina’s creative project below. Follow the links, sign up for the newsletter, and buy a book or two to help the cause. Feel free to share with a few friends. Have a laugh and help our community at the same time!
“Originally, I came from China. But I confess, I am Spanish. I would describe myself as light and bubbly; soft in the middle, but tenacious. My name, Rafael, specifically spelled with a F means ‘god of healing.’
I had traveled on several Minnesota cabin trips, mostly to scare people and once we went on a trip to Mexico for a 40th birthday weekend; but recently I had spent most my life in a dresser drawer. I would say my real life began due to COVID-19. On March 21st, Gina reorganized a dresser and decided to put air back into me. That is when my personality truly blossomed. It seems I am more expressive in times of high stress.
At first, the isolated days Gina and I spent together were just silly. We cooked and organized a lot of virtual dance parties. And then Gina had her third optic neuritis attack. Things got a little more serious. We hatched an idea to publish a book about me with five dollars of each book sale going toward optic neuritis research and awareness.
We hate that it is an invisible disease and is often overlooked. While the cause of Gina’s reoccurring attacks remains undiagnosed, we are going to work to get the bottom of it and hopefully help others along the way. I have to keep Gina going—she is my air supply.
We are working on our book and making new friends in optic neuritis community. Because I am fantastic plastic, while Gina continues to isolate due to a compromised immune system, I get out into the world on her behalf. Together we are fighting to save people’s eyesight, because what else are you going to do in the middle of a pandemic?”
“My mission is to make people laugh, because laughter is really the best medicine. When going through medical challenges, life can feel heavy and as a blow-up doll I provide levity. I am mostly air.
I want to help people, so we are selling a book about our isolated covid life and its ups and downs.
The book will be available in September with five dollars from each book sale going toward optic neuritis research and awareness. I am committing to giving 10% of all funds raised to The MOG Project (for MOG antibody disease).
In the meantime, you can follow my puffed-up life on Instagram @TheNextProjectIsMe”
To learn about the book updates, go here:
To see a PBS Segment on the project:
Hashtags to follow: #blowinguprafael #ginaandtheblowupdoll #ginaandrafael