- N. N. Light
THE SMALLEST MIRACLE: A Guest Post by Don C. Reed #stemcell #stemcells #books #TuesdayBookBlog #medi
Did you see a movie called “THE BOY IN THE PLASTIC BUBBLE”, starring John Travolta? In the film, the hero has a disease called Severe Combined Immunodeficiency (SCID), which means his immune system does not work. Germs that you and I would not even know about (because our immune system would fight them off) could be fatal. To survive, he must live in sterile housing: the plastic bubble.
The movie was based on the true story of a boy named David Vetter.
In the Travolta movie, the boy in the bubble grows up, falls in love, and decides to leave his plastic refuge. His movie doctor tells him he may have built up some immunities; he steps out into the world, and rides off on a horse, behind his girl.
The real-life story did not have such a happy ending.
David Vetter’s family fought for him with tenacity, intelligence, and love.
They managed to get him tremendous amounts of treatment, including help from the National Aeronautics and Space Administration (NASA) which built him a space-suit device to wear, so he could go for a walk outside. It was cumbersome, and he only used it seven times.
The bubble had been set up as a temporary device. The family had lost another child to SCID, and this time they hoped science might provide them a cure, if given time. But when it did not arrive, the boy stayed there, for his own survival.
When his doctor, William T. Shearer, introduced himself, David Vetter put his hand up to the plastic wall—and on the other side, Dr. Shearer put his hand up to meet it.
At the age of 12, a transplant procedure was tried. David’s sister Katherine volunteered to give cells to him in a bone marrow transplant, just as she had done for his brother, years ago.
At first, it seemed to be working. But hidden in the young woman’s body was traces of a dormant virus, Epstein-Barr, undetectable in the screening. It triggered a cancer, which overwhelmed the boy’s body.
The young man said to his doctor, “Here we have all of these tubes and all of these tests, and nothing’s working. I’m getting tired. Why don’t we pull all of these tubes out and let me go home?”
When David could no longer be effectively treated in the bubble, he was taken out: February 7th, 1984. His mother kissed him for the first time. But the lymphoma had spread throughout his body. His health deteriorated.
Importantly, David knew every step of the way what was going on, to the limits of his understanding. When he was four, he took a syringe and poked a hole in the bubble. Germs were explained to him, and from that point on the very bright child was kept fully informed.
His last conscious act was to wink at the doctor who had tried so hard to help him.
Then he passed away.
And this was the condition which threatened baby Evangelina Padilla Vaccaro.
“I knew something was wrong right away,” said her mother Alysia in a telephone interview:
“She had a gray color, did not move right, and she spit up a lot. … she had no immune system; her body had no way to fight back against germs; a cold could kill her. We made our house as sterile as we could. My husband Christian and I wore masks all the time. Evangelina never saw our mouths.”
“And then I heard about stem cells and UCLA and Dr. Donald Kohn-- and how it might be possible to rebuild Evangelina’s immune system.
“But stem cells? I had been raised a good Catholic girl, and had heard all kinds of bad things about stem cells. But when it is your child in danger, you will listen very carefully, and we did. This was about saving lives.
“There was just one opening left on the clinical trials… Dr. Kohn held it open for the two months it took our daughter to grow strong enough to endure the operation.
“Dr. Kohn was up front with us… never promising a cure. But my husband and I had read more than 30 studies on the National Institutes of Health website, trying to educate ourselves on what had been tried before on our daughter’s condition, and Dr. Kohn’s approach made sense.
“He would take out bone marrow from her hip. There was a mutation in her genes. He would fix the gene, put it into some stem cells, and put those back.
“I had had three miscarriages before the twins arrived… was I now to lose another of my children?”
And then, everything changed. Her mom and dad took Evangelina outside, and held her high in the air. She felt the sunlight for the first time. She opened her mouth, and laughed for sheer joy.
Evangelina had been given a gift from the people of California. Something small, and wonderful: a California cure.
I had the privilege of meeting Evangelina and her family at a California stem cell board meeting.
Evangelina was four years old by then, spunky, wearing a pink superhero T-shirt. She stepped up to the microphone, then jumped back, startled by the squeal of feedback. But she stuck to her task.
“Thank you,” she said, in a tiny voice.
Her Mom also spoke to the CIRM: “Thank you-- for keeping my family together.”
When I talked to her later, she added, “If there is an effort to build Prop 71 part two, count me in!”
In the course of writing this article, I reached out to Dr. William T. Shearer, the doctor who had cared for David Vetter, wondering if he had any comments to make, having given so much of his life to SCID research and therapy.
“Dear Mr. Reed,
“I know Dr. Donald Kohn very well, and we are collaborators in the stem cell program. Dr. Kohn reconstitutes SCID children with a genetic insertion that corrects gene defect. Many children have benefited from his new form of SKID children reconstitution. I strongly support his research and clinical work with these special patients. Thank you for your note.
“Best wishes for you and your son in 2018.
“Sincerely, WTS”. (William T. Shearer, personal communication)
AND— he reached out to Carol Ann Demaret, Mrs. Vetter, David’s mother, who was willing to speak with me.
I was nervous before our talk. How would it feel for her, to have lost two children to a disease—for which there now existed a cure?
But I “recognized” her right away. She was an advocate, dedicated to the fight against a disease: Severe Combined Immunodeficiency: SCID. She has not quit. She talked about not letting the community down, forging ahead with research—continued help for future generations.
She explained some things I did not understand.
“The bubble was like a second womb,” she said, “We thought at first that David’s immune system was just late in developing, and if we just gave him a little time, it would activate.”
Sustained by strong faith and personal values, she has never given up.
“In the back of my mind, David’s loss is always there,” she said, “But when people ask me about the pain, I always tell them:
“God sent David to me; research gave us 12 years to spend with him.”
After David died, her biggest worry was that his sister Katherine might be a carrier, and might herself give birth to a child with SCID.
When Katherine was 23, married a year, and needing to know, Dr. Shearer called her into his office and told her: she was not a carrier.
Tomorrow, David Vetter’s mother will make a beautiful meal-- for her two strong and healthy grandsons.
Title: California Cures! How the California Stem Cell Program is Fighting Your Incurable Disease!
Author: Don C. Reed
Genre: Medicine, Stem Cell Research, Sciences
Thirteen years ago, America faced an epidemic of chronic disease: cancer, paralysis, blindness, arthritis, Alzheimer's disease, diabetes and more.
But California voters said "YES!" to a $3 billion stem cell research program: the awkwardly-named California Institute for Regenerative Medicine (CIRM). Born into battle, the scrappy little state agency was immediately blocked by three years of anti-science lawsuits — but it defeated them all. And then?
A quiet triumph. With a focused intensity like the Manhattan Project (but for peaceful purposes, not to build a bomb), scientists funded by CIRM took on the challenges: disease and disability called chronic: incurable.
In a series of connected stories, accurate though written to entertain, "California Cures" relates a war: science against disease, with lives on the line. Think what it means for a paralyzed young man to recover the use of his hands, or for a formerly-blind mother to see her teenaged children — for the first time!
Do you know the "bubble-baby" syndrome? Infants without a proper immune system typically die young; a common cold can kill. But for eighteen babies in a stem cell clinical trial, a different future: they were cured of their disease.
No one can predict the pace of science, nor say when cures will come; but California is bringing the fight. The reader will meet the scientists involved, the women and men behind the microscope, and share their struggle.
Above all, "California Cures" is a call for action. Washington may argue about the expense of health care (and who will get it), but California works to bring down the mountain of medical debt: stem cell therapies to ease suffering, and save lives.
Will California build on success — and invest $5 billion more in stem cell research?
"We have the momentum", says author Don C Reed, "We dare not stop short. Chronic disease threatens everyone — we are fighting for your family, and mine!"
Introduction: Evangelina and the Golden State
The Absolute Minimum You Need to Know First
To Breathe, or Not to Breathe
The Strongest Man in the World
When the Dolphin Broke My Ear
The Boy with Butterfly Skin
The Great Baldness "Comb-Over" Replacement?
"He Sees! He Sees!"
Cop at the Window
"Go West, Young (Wo)Man" — To a Biomed Career?
And How Will You be Paying for that New Heart?
The Answer to Cancer?
A Political Obstacle to Heart Disease Cure?
Your Friend, the Liver!
"Bring 'em Back Alive"
The Color of Fat
Revenge for My Sister
A Story with No Happy Ending?
Aging and Stem Cells
The "Impending Alzheimer's Healthcare Disaster"
President Trump's Great Stem Cell Opportunity
Leiningen's Ants and Parkinson's Disease
On the Morality of Fetal Cell Research
Democracy and Gloria's Knees
Three Children, and the Eternal Flame
Autism, Mini-Brains, and the Zika Virus
Why "The Big Bang Theory" Matters to Me
Musashi and the Two-Sword Solution
"The Magnificent Seven"
The Connecticut Commitment
In Memory of Beau
To Relocate Alligators, or Turn a Country on to Biomed?
Whale Sharks and Outer Space
Mr Science Goes to Washington?
When Oklahoma is Not OK
James Bond and Melanoma
Neurological Diseases vs. California
Driving to the Storm
Door into Tomorrow
Stem Cell Battles — On Times Square?
Annette, Richard Pryor, and Multiple Sclerosis
Mike Pence, and Reproductive Servitude
Motorcycle Wrecks and Complex Fractures
Even Dracula Gets Arthritis
Tugboat for Cure
Wheelchair Warriors, Take Back Your Rights!
Sickle Cell Disease vs. Stem Cell Agency
Dwight Clark, "The Catch," and A L S
A Friend is Lost
Dying in Doonesbury, Fighting Back at UCD
The Man with the Autographed Baseball
The Gorilla Gynecologist Returns
Wrestling the Invisible Enemy
Two Warriors Named Joan
An End to Heroism?
Message from the Middle Kingdom
Scientists and the Undocumented
The Girl, the Bandit, and Women in Science
The Greatest Proposal
Forty-Two California Clinical Trials
Gathering of Champions
A Nobel Prize for Bob Klein?
Afterword: For More Information
Amazon US https://www.amazon.com/California-Program-Fighting-Incurable-Disease/dp/981323136X/
Amazon CA https://www.amazon.ca/California-Program-Fighting-Incurable-Disease/dp/981323136X/
Amazon UK https://www.amazon.co.uk/California-Program-Fighting-Incurable-Disease/dp/981323136X/
Publisher Buy Link http://www.worldscientific.com/worldscibooks/10.1142/10747
For Don Reed, the inspiration for the work he does is the people he works with and for. Reed is often called the “Grandfather of Stem Cell Research Advocacy”, and has been in the eye of the storm of stem cell research and advocacy since before the passage of Proposition 71, having worked at grassroots, national, international, and state levels to garner public support and advocating for policy action.
Reed’s involvement with stem cell research began after his son Roman was in a paralyzing football accident in 1994. The Reeds pursued multiple treatments and clinical trials nationally and internationally, and in their process of searching for spinal cord injury treatments for Roman, Don was led towards stem cell research. In a pre-computer era, he wrote to every member of the United States Senate and Assembly. Receiving no response, he then reached out to every member in the California Assembly and Senate. Assembly member John Dutra, (D-Fremont, retd.) responded, and the Roman Reed Spinal Cord Injury Research Act (AB 750), a research funding law, was passed in 1999 and funded America’s first embryonic stem cell therapy.
In 2002, Reed organized grassroots support for California Senator Deborah V. Ortiz (D-Sacramento, retd.) to pass the nation’s first stem cell research laws, giving California official permission to perform both embryonic stem cell research and somatic cell nuclear transfer.
His contribution to stem cell research and advocacy grew when he joined forces with Bob Klein in 2003. Klein’s leadership brought the passage of $3 billion California initiative, Proposition 71, the California Stem Cells for Research and Cures Act, which became the California Institute for Regenerative Medicine. Reed worked first as a volunteer, and later became vice President for Public Policy for Americans for Cures Foundation, a position he holds today.
Awards and Recognitions: Reed has won numerous advocacy awards, including the first patient advocate award from the California Institute for Regenerative Medicine (CIRM), the Willie Shoemaker Award for advancing spinal cord injury awareness, the first Genetic Policy Institute Advocate of the year Award, and various writing and teaching awards, including “Teacher of the Year” for Fremont Unified School District, and the National Press Award.
As a writer, he is best known for approximately 200 articles on stem cell politics for the Huffington Post, and as the author of the book, “STEM CELL BATTLES: Proposition 71 and Beyond”. Reed also wrote five books about the ocean, based on his 17 years as a scuba diver for Marine World Africa USA.
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