The 26-year-old Ohioan has not let his rare genetic condition prevent him from having a rich life. But Trump’s second administration is creating new risks to his fragile health.
Years ago I arrived in USA and was asked where I came from .I announced that I am Australian and was amazed when that seemingly educated person replied that I speak really good English (I was born in Wimbledon) I have continually been amazed at the ignorance shown around about “others” We do have an element of religious bigots here in OZ but mostly acknowledge that..We are all Boat People who mostly get along well enjoying culinary delights that our refugees have infused into what was a very bland English fare of roast beef or lamb and potato’s None of these products belonged here and attracted all sorts of pests previously unknown by Aboriginal First Nations .
Can the USA please introduce less education about how Great you are but more about how we share our history with everybody in the world and we can all be humble maybe ?
Thank you for telling Shane's story. His courage and compassion along with his caregivers are what make this country great. I still can't believe anyone bought Trump's MAGA bull----Trump and his tribe have no clue what makes America great.
If there is any Nobel prize in this category, this young man certainly deserves it. May the Universe shine on you for many years, Shane! You are a total mensch!
Shane, thank you so much for sharing your story. I was a hospital kid. I was in and out of the hospital from age 6-17 and then periodically for years after that. I’m over 40 now and I still have the 101 Dalmatians stuffed animals I got in the hospital after an emergency. They were like real dogs/friends to me in an otherwise miserable time. Your charity is something that really makes a difference. You are making a difference.
Thank you Shane for sharing your story and for your thoughtfulness in caring about other EB patients and in leaving a legacy for them. Your strength and grace is inspiring. Thank you to Jim and the Bulwark for bringing us Shane’s story.
Thanks for sharing your story Shane. Thanks for writing this story Jim. I too have a rare/orphan disease, Friedreich’s ataxia (FA).
It is always disabling and often fatal. It is multi-system starting with the nervous system, causing degeneration. People with FA are typically wheelchair users. FA can cause deafness, blindness, diabetes, and more. It also causes cardiomyopathy, which is what makes the disease lethal.
I couldn’t agree more with Shane. There are a lot of us in the country with a disease, approximately 30 million. 90% of these diseases do not have a treatment or care. Many of us are dependent on Medicaid, Medicare and Social Security. Just like Shane, people with FA need a cure. We need a robust NIH and FDA. We need strong science. We certainly need to live in a world where we are viewed with the compassion I’m reading here in the comments. Life being sick is hard enough without having to worry about the government, taking away the little benefits/supports we have.
I've been thinking about Shane since I read Jim's very meaningful profile yesterday. Just now I watched their interview video. Reacting in so many directions but mainly just thinking about choices we have in our lives. A central one is - do I build other people up...or not? ...do I even sometimes go out of my way to tear people down? Shane is a builder.
The way Shane reflected on JD Vance & RFK jr - those two have never been tested as Shane is nearly every day. Shane expressed his worries about their actions and potential for harm. He spoke without vitriol. He spoke with compassion & concern for all who might be negatively affected. That's where he puts his spirit - considering what could build up his fellow humans.
In his interview with Jim, Shane's setting included a couple pop culture items referencing Star Trek and the United Federation Planets. I feel Shane took to heart that '60's idealist sci-fi ethic, that we could rise above our limiting little planet with its gravity, its hatreds & fears, its diseases & small imaginations. We dream of something better, something not quite here yet, something we build by tackling the challenges that come our way & by building up others.
Boldly go, hermano! I'll take hold of your coattails and fly. - j
You are very perceptive! Star Trek showed me a world where anyone can explore the stars, no matter who you are. It made a big difference to me when I was growing up. I would (and still do) distract myself during my bandage changes and dream of being a Starfleet captain.
It probably wouldn’t surprise you to know that I’m also a big fan of the Twilight Zone and its creator Rod Serling. That postwar moderate liberalism rooted in humanist principles is really my jam. Both Rod Serling and Gene Roddenberry showed that a better world is possible if we lift each other up and strive for a future that respects our inherent dignity and limitless potential.
Thank you for sharing your story Shane and thank you Jim for bringing it to us.
It’s inspiring to hear how you have been able to live life to the fullest despite your condition. I can’t imagine what it’s like to go through what you deal with daily, and I think it’s a great testament to your character how you are focused on helping others. Doggie’s Friends sounds like a great way to help bring joy and comfort to the next generations of kids dealing with difficult times. I’m glad that despite your physical limitations you have still been able to make a difference.
With so much of the news these days about all the chaos and connivers, I am glad to see The Bulwark reporting on someone making a positive impact on the world.
People like Shane are why I’m proud to be part of The Bulwark.
Like Shane, I live in Cincinnati, have a couple of orphan diseases, and have a wonderful team of doctors at the University of Cincinnati. Mine are respiratory. I sometimes have a cough that sounds, according to a dear, deceased friend, as if I'm going to cough up my lower digestive track. Close. My stomach into my thorax. That's fixed now.
Recently my doctors added another diagnosis. (I won't list them all.). Eosinophilic asthma. I have too many eosinaphilics and they Inflame my respiratory tract. But there's a treatment! It's a shot once a month for three months, then every other month. I've had one shot. And I barely cough! I'm still short of breath sometimes and have a lot of fatigue.
When I got up this morning and realized that I wasn't coughing I was so happy.
And I thought to myself, "That's science!"
Louder for those in the back:
"THAT'S SCIENCE!"
I want to keep all our agencies that work on science.
There are days when the cruel perversity of this administration is unbearably heavy. This story hit hard. I hope I can help Shane in some small way carry the load and fight.
Thank you for sharing Shane’s story with all of us. What a gift to know that we are in the world at the same time that he is 💕. I just made a donation to Doggie and Friends. I had a stuffed horse named Stumpy (!) who helped me get through many things as a child. I’m now blessed enough as an adult to have a real horse! Animals, both stuffed and living, have been my beloved companions throughout life and they offer so much emotional sustenance and healing. I am honored to support Shane’s work!
Hey Shane, I'm glad to be part of the Bulwark family too, where I could run across someone like you. Nice to meet you via Jim's article. Thanks for explaining the nuts and bolts of the current discombobulation of government services impacting you. You are not alone, I've heard you, and will pray for you. Jello shots? Good grief, I much rathered shotgunning a beer back then. Hang in, Dave.
Shane here - my heart is filled with gratitude after reading all these lovely comments! I’m grateful to be a part of the Bulwark family! My condition is very rare and very complex, and explaining my situation is second nature to me. The more people who know about EB, the better. It’s very lonely living with a condition that is so rare and unheard of.
If anyone has any questions, fire away! My email is shanespace1701@gmail.com if you want to message me privately.
Excellent. I’m so looking forward to your long articles and weekly wrap ups, Jim!
Years ago I arrived in USA and was asked where I came from .I announced that I am Australian and was amazed when that seemingly educated person replied that I speak really good English (I was born in Wimbledon) I have continually been amazed at the ignorance shown around about “others” We do have an element of religious bigots here in OZ but mostly acknowledge that..We are all Boat People who mostly get along well enjoying culinary delights that our refugees have infused into what was a very bland English fare of roast beef or lamb and potato’s None of these products belonged here and attracted all sorts of pests previously unknown by Aboriginal First Nations .
Can the USA please introduce less education about how Great you are but more about how we share our history with everybody in the world and we can all be humble maybe ?
Thank you for telling Shane's story. His courage and compassion along with his caregivers are what make this country great. I still can't believe anyone bought Trump's MAGA bull----Trump and his tribe have no clue what makes America great.
If there is any Nobel prize in this category, this young man certainly deserves it. May the Universe shine on you for many years, Shane! You are a total mensch!
Shane, thank you so much for sharing your story. I was a hospital kid. I was in and out of the hospital from age 6-17 and then periodically for years after that. I’m over 40 now and I still have the 101 Dalmatians stuffed animals I got in the hospital after an emergency. They were like real dogs/friends to me in an otherwise miserable time. Your charity is something that really makes a difference. You are making a difference.
God Bless this young man and all of the team that support him!
Thank you Shane for sharing your story and for your thoughtfulness in caring about other EB patients and in leaving a legacy for them. Your strength and grace is inspiring. Thank you to Jim and the Bulwark for bringing us Shane’s story.
Thanks for sharing your story Shane. Thanks for writing this story Jim. I too have a rare/orphan disease, Friedreich’s ataxia (FA).
It is always disabling and often fatal. It is multi-system starting with the nervous system, causing degeneration. People with FA are typically wheelchair users. FA can cause deafness, blindness, diabetes, and more. It also causes cardiomyopathy, which is what makes the disease lethal.
I couldn’t agree more with Shane. There are a lot of us in the country with a disease, approximately 30 million. 90% of these diseases do not have a treatment or care. Many of us are dependent on Medicaid, Medicare and Social Security. Just like Shane, people with FA need a cure. We need a robust NIH and FDA. We need strong science. We certainly need to live in a world where we are viewed with the compassion I’m reading here in the comments. Life being sick is hard enough without having to worry about the government, taking away the little benefits/supports we have.
I've been thinking about Shane since I read Jim's very meaningful profile yesterday. Just now I watched their interview video. Reacting in so many directions but mainly just thinking about choices we have in our lives. A central one is - do I build other people up...or not? ...do I even sometimes go out of my way to tear people down? Shane is a builder.
The way Shane reflected on JD Vance & RFK jr - those two have never been tested as Shane is nearly every day. Shane expressed his worries about their actions and potential for harm. He spoke without vitriol. He spoke with compassion & concern for all who might be negatively affected. That's where he puts his spirit - considering what could build up his fellow humans.
In his interview with Jim, Shane's setting included a couple pop culture items referencing Star Trek and the United Federation Planets. I feel Shane took to heart that '60's idealist sci-fi ethic, that we could rise above our limiting little planet with its gravity, its hatreds & fears, its diseases & small imaginations. We dream of something better, something not quite here yet, something we build by tackling the challenges that come our way & by building up others.
Boldly go, hermano! I'll take hold of your coattails and fly. - j
You are very perceptive! Star Trek showed me a world where anyone can explore the stars, no matter who you are. It made a big difference to me when I was growing up. I would (and still do) distract myself during my bandage changes and dream of being a Starfleet captain.
It probably wouldn’t surprise you to know that I’m also a big fan of the Twilight Zone and its creator Rod Serling. That postwar moderate liberalism rooted in humanist principles is really my jam. Both Rod Serling and Gene Roddenberry showed that a better world is possible if we lift each other up and strive for a future that respects our inherent dignity and limitless potential.
- Shane DiGiovanna
Thank you for sharing your story Shane and thank you Jim for bringing it to us.
It’s inspiring to hear how you have been able to live life to the fullest despite your condition. I can’t imagine what it’s like to go through what you deal with daily, and I think it’s a great testament to your character how you are focused on helping others. Doggie’s Friends sounds like a great way to help bring joy and comfort to the next generations of kids dealing with difficult times. I’m glad that despite your physical limitations you have still been able to make a difference.
With so much of the news these days about all the chaos and connivers, I am glad to see The Bulwark reporting on someone making a positive impact on the world.
People like Shane are why I’m proud to be part of The Bulwark.
Like Shane, I live in Cincinnati, have a couple of orphan diseases, and have a wonderful team of doctors at the University of Cincinnati. Mine are respiratory. I sometimes have a cough that sounds, according to a dear, deceased friend, as if I'm going to cough up my lower digestive track. Close. My stomach into my thorax. That's fixed now.
Recently my doctors added another diagnosis. (I won't list them all.). Eosinophilic asthma. I have too many eosinaphilics and they Inflame my respiratory tract. But there's a treatment! It's a shot once a month for three months, then every other month. I've had one shot. And I barely cough! I'm still short of breath sometimes and have a lot of fatigue.
When I got up this morning and realized that I wasn't coughing I was so happy.
And I thought to myself, "That's science!"
Louder for those in the back:
"THAT'S SCIENCE!"
I want to keep all our agencies that work on science.
Great piece. Thanks to Shane and Patsy for sharing their story, and to you for writing it so beautifully.
There are days when the cruel perversity of this administration is unbearably heavy. This story hit hard. I hope I can help Shane in some small way carry the load and fight.
Thank you for sharing Shane’s story with all of us. What a gift to know that we are in the world at the same time that he is 💕. I just made a donation to Doggie and Friends. I had a stuffed horse named Stumpy (!) who helped me get through many things as a child. I’m now blessed enough as an adult to have a real horse! Animals, both stuffed and living, have been my beloved companions throughout life and they offer so much emotional sustenance and healing. I am honored to support Shane’s work!
Hey Shane, I'm glad to be part of the Bulwark family too, where I could run across someone like you. Nice to meet you via Jim's article. Thanks for explaining the nuts and bolts of the current discombobulation of government services impacting you. You are not alone, I've heard you, and will pray for you. Jello shots? Good grief, I much rathered shotgunning a beer back then. Hang in, Dave.
Shane here - my heart is filled with gratitude after reading all these lovely comments! I’m grateful to be a part of the Bulwark family! My condition is very rare and very complex, and explaining my situation is second nature to me. The more people who know about EB, the better. It’s very lonely living with a condition that is so rare and unheard of.
If anyone has any questions, fire away! My email is shanespace1701@gmail.com if you want to message me privately.