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As Repair Stem Cells miraculously heal Charlie Knuth, his family prepares to adopt another child with EB.
Charlie Knuth and his mother, Trisha, play in their Darboy home nearly a year after Charlie underwent a stem cell transplant. Charlie has the life-threatening disease epidermolysis bullosa, better known as EB. He was born without the gene that binds skin together. / Wm. Glasheen/The Post-Crescent.
DARBOY WISCONSIN — A year after enduring a stem cell transplant that could ultimately save his life, Charlie Knuth, 5, is focused on one thing — being a little boy.
"He plays like a regular kid," said his mother, Trisha Knuth. "Charlie is happy, the family is happy and he's not in pain. That's really what matters right now."
Charlie has the rare skin disease epidermolysis bullosa, commonly known as EB.
Born without the protein that binds skin together, Charlie's body once blistered badly inside and out, a painful condition that typically leads to a lethal form of skin cancer. But that was before the Dec. 30, 2010, bone marrow transplant, which helped Charlie's body produce the missing protein and strengthened his skin.
"He's one of the kids that made tremendous progress," said Dr. Jakub Tolar, Charlie's physician at the University of Minnesota Amplatz Children's Hospital in Minneapolis. "(Charlie) responded very well and he seems to be on the right track. His organs are functioning fine, and now he's going to — I would hope — continue to heal."
Abandoned at birth, Charlie came home with the Knuths from a hospital in Milwaukee when he was 2 weeks old. His adoption was finalized a year later.
Charlie's remarkable progress has prompted the Knuths to adopt another child who suffers from the same severe form of EB that has shaped Charlie's life. Trisha Knuth will travel to Washington next week to meet 6-year-old Seth.
"(Seth) is in a group home and he has never had a family," Trisha Knuth said. "He's in pretty bad shape."
She said the outpouring of community support her family received during Charlie's journey has prepared the family as they enter a new chapter with Seth.
"It's a lot different this time," she said. "Before all this happened, we were kind of alone. Nobody knew what was wrong with (Charlie); nobody knew how to help. And now because of all of the publicity and community support, I really feel like we have such a large support system that it'll be much easier."
A family transformed
The lesions that once blanketed Charlie's small frame have largely receded. Just a few patches of fragile skin remain, and those are carefully wrapped with bandages that once entombed most of Charlie’s body.
"We try to leave as much skin as we can exposed," Trisha Knuth explained. "It seems like the more we can leave exposed, the tougher it gets."
Tolar said that's precisely what Charlie's skin needs to continue healing.
"The idea is to not cover the spots that are open wounds because the usual wear and tear of normal daily life is actually good for it," Tolar said. "It informs the cells in the bone marrow to travel to the skin and make more of the collagen type 7 (protein) that he needs. There are several cycles of healing that have to occur to get the best result."
The dramatic changes in Charlie's life aren't merely physical. Both his mother and Tolar expressed amazement at the way his mental and emotional well-being evolved as well.
"I can't even remember the last time he cried in the bath (from the pain)," Trisha Knuth said. "From one extreme to this — it's profound, it's amazing."
And the change in Charlie's quality of life has rippled to the rest of his family, including his brothers, Alex and Hunter, both 16, and sister, Chloe, 8.
"Let's put it this way — a happy mom is a happy family," Trisha Knuth said, chuckling. "Before (the transplant) all of his pain and all of his anxiety was taken out on me because I was his main caregiver, so things were very stressful around the house. Charlie would deal with pain by acting out with hitting and screaming and calling names. He does not do that anymore, so everybody's just very happy.
"My mom and dad have finally been able to baby-sit for Charlie, and that's never happened. So me and (Charlie's father) Kevin were able to go do something on our anniversary for the first time since Charlie was born. That's a big deal."
A time to grow
Tolar said it's too early to tell whether the transplant reduced Charlie's risk for developing skin cancer, but he said he's optimistic.
"The model is that (EB patients) get skin cancer because of the enormous irritation of the skin," he said. "So if you remove the irritation, you will remove the risk of cancer. But it's going to take a decade or more to actually know if that's the case."
Tolar will continue to monitor Charlie's progress and meet with him at least once a year until he turns 18.
For now, Tolar said, Charlie needs to focus on staying active and growing up as any little boy would.
"He's as bright as anybody else and probably mature beyond his years because of what he went through and he should be given all the opportunity in life as anybody else," Tolar said. "That was the whole goal of the transplant — to give him that."
Don Margolis Comment: "This story is a lot bigger than just Charlie and it will prove to be so over time, but for now I am very proud of Trisha and the support system the family has built up. Darboy has to be the one town in America which does not believe the Big Pharma baloney put out by thousands of corrupt American Medical Scientists (not to mention hundreds of thousands of MDs) that "Adult Stem Cells don't work." Anything to protect profits, and patients be dammed.
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Antony Atala at Wake Forest explains why
To many people, the idea of growing replacement body parts in the lab sounds like modern-day science fiction. People are often surprised to learn that this notion of harnessing the body's natural regenerative powers isn't new. In fact, aviator Charles Lindbergh did research in this area back in the 1930s in hopes of finding a solution for his ailing sister-in-law. The idea has endured because of the desperate need for replacement organs. Every 30 seconds, a patient dies from diseases that could be treated with organ or tissue replacement.
Today, regenerative medicine is becoming science fact. In the area of cell therapies, advances include a recent report that cardiac stem cells were able to improve heart function in a small group of patients with heart failure. In the area of tissue engineering -- or growing organs in the lab -- skin, cartilage, bladders, urine tubes, trachea and blood vessels have all been engineered outside the human body and implanted in patients. While these advances are currently helping small groups of patients through clinical trials, the goal of regenerative medicine scientists is to expand the applications of regenerative medicine to a wider range of diseases and also to larger groups of patients.
The U.S. Department of Health and Human Services has called regenerative medicine the "next evolution of medical treatments". With its potential to heal, this new field of science is expected to revolutionize health care. Because of the promise of regenerative medicine, the U.S. military has funded an $85 million effort to develop regenerative medicine treatments for wounded warriors.
Regenerative medicine offers the potential to improve the quality of life for many, but also to combat rising health care costs. Early estimates project that regenerative medicine therapies will result in direct health care cost savings in the United States of $250 billion per year for the chronic diseases of renal failure, heart failure, stroke, diabetes, burn and spinal cord injuries.
In my TED talk, I highlighted some of the work of the Institute for Regenerative Medicine at Wake Forest School of Medicine in Winston-Salem, NC. Our team of more than 300 scientists is working on cell therapies and developing replacement tissues and organs for more than 30 different areas of the body.
For example, the talk highlights our still-experimental work to engineer a human kidney. Being able to replace solid organs such as the heart, liver, kidney and pancreas is considered the "holy grail" of tissue engineering. That's why we're pursuing multiple strategies in this area: cell therapies, tissue "inserts" to augment an organ's function, and "printing" replacement organs.
At TED, we demonstrated 3-D printing technology, already used in a variety of industries -- from auto parts to concrete structures. Our goal, or course, is to apply the technology to organs. The project is based on earlier research in which we engineered miniature kidneys using biomaterials and cells. In animals, these structures were shown to be functional, in that they were able to filter blood and produce dilute urine.
This printer, while still experimental, is being explored for organs such as the kidney and structured tissue such as the ear. The ultimate goal is to use patient data, such as from a CT scan, to create a computer model of the organ we want to print. This model would be used to guide the printer as it layer-by-layer prints a replacement organ made up of cells and the biomaterials to hold the cells together.
For me, the real highlight of the TED experience was a reunion with Luke Masella, one of the first patients to receive a lab-engineered organ -- a bladder. Seeing Luke again and hearing about his successes reinforced in my mind the ultimate goal of regenerative medicine -- to make patients better. That in itself makes it an idea worth sharing in 2012 and beyond.
WATCH ANTONY ATALA'S EXCITING VIDEO---17 minutes---
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MIRACLE—Chuck Melber and his wife Betsy visit the Vatican to speak at a conference about how stem cell treatment saved Melber’s life. Chuck had more than 30 stents implanted in his heart before he was told there was no more medical intervention for him. The adult stem cell clinical trial was his last hope.
At the age of 48, Charles “Chuck” Melber of Agoura Hills had run out of hope.
His medical nightmare started in 2000 when he had his first heart attack at the age of 44. By 2004, more than 30 stents had been placed in Melber’s heart.
Doctors told him there was nothing else they could do to repair his heart short of a transplant.
Although the stents kept him alive, the quality of Melber’s life had been so diminished that he could barely perform simple daily tasks.
Dr. John Hess, Melber’s doctor at Los Robles Hospital, suggested that his patient participate in an adult stem-cell clinical trial.
Stem cells, adult or embryonic, have the potential to develop into a variety of cells as a person grows. Adult stem cells can renew themselves and repair or replace surrounding cells.
Since the clinical trial was a double blind study, Melber could have been given a placebo, which would have meant he would undergo invasive treatment with no guarantee that he was receiving potentially lifesaving stem cells.
In September 2006, Melber had adult stem cells injected into his heart muscle at the Scripps Green Hospital in San Diego.
However, before he received the injections, doctors had to collect his stem cells. The process made him feel like he had come down with the flu, Melber said.
“They give you injections for four days, pull out the stem cells and put them into your blood stream,” he said. “Each day it gets worse, but once the injections stop you feel better pretty quick. On the fourth day, I was put on dialysis and had my blood filtered for seven hours to pull out the stem cells.”
In the meantime, Melber’s heart had been completely mapped. Doctors knew exactly where in the heart muscle to inject the stem cells. The procedure was similar to an angiogram. Stem cells were transferred to his heart through the groin via the femoral artery.
Once the procedure was over, Melber felt better quickly. His wife, Betsy, said she was sure that meant her husband had been given the stem cells because he was not generally an optimistic person.
“I felt better within a week’s time,” Melber said. “Within six months, I was 200 percent better.”
Doctors ran tests and determined that Melber’s heart was indeed healing.
“New collateral arteries have grown to bring blood into my heart,” Melber said.
Proof that a new artery has developed remains elusive. Medical technology can’t prove that new arteries have grown, at least not yet, Melber said. But doctors say that the main artery to his heart is 100 percent blocked.
Melber says he has regained his ability to live life to the fullest. Since the clinical trial, he has newfound gusto. He can walk as much as he pleases, he takes fewer medications and is back at work building custom homes and commercial projects.
Melber is the contractor responsible for building the Gardens of the World in Thousand Oaks and custom homes in Lake Sherwood, Beverly Hills and Malibu.
In November, Melber, his wife and daughter went to Rome to participate in the Pontifical Council for Culture international conference at the Vatican.
The conference, “Adult Stem Cells: Science and the Future of Man and Culture,” brought together doctors, scientists, policymakers, ethicists, church leaders, educators and others to discuss and explore the future of adult stem cells in medicine.
Betsy Melber explained the Catholic Church’s stance on the use of stem cells for medical treatment.
The church doesn’t condone using embryonic cells to treat medical conditions because doing so would destroy an embryo. However, the church has no such prohibitions against using adult stem cells, which can be gleaned from most tissues in the body.
“(The Catholic Church) has been supportive of adult stem cell medical treatment all along,” Betsy Melber said. “The adult stem cell treatment is newer, more revolutionary. It will take away the controversy over (the treatment).”
Melber was thrilled to participate in the conference and share his story.
“It feels like a miracle,” Melber, now 55, said of his recovery. “I don’t have any chest pains, no shortness of breath. I am able to lead a normal life to the fullest capacity. I don’t have my heart holding me back. I can go full throttle forward.”
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