Posted on 01/13/2011 9:36:14 PM PST by Coleus
Despite having a rare neurodegenerative disease called Niemann-Pick Type C, the two oldest Hadley children, Peyton and Kayla, enjoy staying active and participating in events with their family at their Catholic parish in Medford, Ore. (Photos by Jared Cruce)
Born three years apart, Peyton and Kayla Hadley began their lives as normal, healthy children. For their first seven years, both progressed normally as they began elementary school, scoring high on tests with excellent reading skills. Then, when Peyton turned 8, things began to change. One of the first signs that something wasn't right began with Peyton's tendency to cock his head while reading. "It was gradual at first," said Bryan Hadley, Peyton and Kayla's father and a member of Rogue River Council 1594 in Medford, Ore. "We'd notice that he was having a harder and harder time tracking down or up with his eyes."
After a battery of tests administered by medical doctors, eye doctors and physical therapists, the Hadley family finally received an explanation of their son's problems on Nov. 9, 2007. Peyton had a neurodegenerative disease known as Niemann-Pick Type C (NPC). It is almost always fatal, and it has no cure. Although tempered by the news that the Hadleys' third child, Jonah, tested negative for the disease, Kayla was also diagnosed with NPC about a year later.
PROMOTING ETHICAL RESEARCH
Bryan and his wife Laura recovered from the shock and, putting their faith in God and science, began researching the disease. They discovered NPC was among more than 5,000 "orphan diseases" — rare disorders that often affect children and, because they are largely ignored by the pharmaceutical industry, have little hope for cures. A metabolic disorder that prevents cells from properly processing cholesterol, NPC is so rare that there are only about 500 diagnosed cases worldwide. NPC patients commonly suffer from an enlargement of the liver and spleen, where cholesterol-glutted cells accumulate. Affected cells also corrode the central nervous system, leading to debilitated motor skills. Another telltale sign of the disease is vertical gaze palsy — which Peyton exhibited in his reading habits. Because it usually leads to the same mental regression, NPC is often called "juvenile Alzheimer's."
Once they knew what they were up against, the Hadleys created a non-profit organization, Hadley Hope (hadleyhope.com), to help find a cure. In addition to raising awareness about NPC, which often goes undiagnosed, the organization has raised more than $211,000 in research funds since 2007. "The only way to do anything about the disease was to come up with the money for research," Laura explained.
"We thought early on about what would happen if scientists found a cure for NPC that uses embryonic stem cells," Bryan said. "Would we use that cure with our children? The answer is no. It would be the taking of another life to save our children, and that can never be justified in our faith." Not that the decision was easy, Laura added. "If there was a cure in front of us involving embryonic stem cells," she said, "it would be heart-wrenching, but I know what our faith tells us — and we believe it to the core."
THE PROGRESSION OF HOPE
The Hadleys believe that adult stem cells not only offer an ethical basis for research, but also hold one of the greatest hopes for finding a cure. Most credible estimates, they said, put any real cure about 10 years away, but they are working to revise that forecast with help from groups such as the John Paul II Stem Cell Research Institute in Iowa City, Iowa. Dr. Alan Moy founded the institute in 2006 in part to make up for the lack of ethical stem-cell research at secular institutes and the poor government funding that is typically directed toward adult stem cells. As a first step toward a cure for NPC, Moy and his colleagues were able to harvest and cultivate adult stem-cell lines from Peyton and Kayla's fat tissue. They are now working to develop methods to generate induced pluripotent stem cells — omnibus cells with the same potential as embryonic stem cells to differentiate.
"We want to take the adult stem cells and genetically reprogram them back to the most primitive state," Moy explained, adding that such cells are not ethically controversial. Once the methods are successfully developed, Moy said, doctors can use the resulting cells to battle NPC as a tool or a therapy. "As a tool, we'll take a cell from a patient with the disease, create a stem cell model and then take an already approved drug," explained Moy. "The hope is that the drug will enter into the cell and attach to the genetically mutated protein. It will then help restore fully or partially the mutated protein to get it to function more normally."
More directly, Moy added, stem cells could be used as a form of therapy. "To some diseases, the adult stem cell might be able to partially or fully regenerate organ function," he said. Because of the progress that has already been made, researchers at the National Institute of Health Chemical Genomics Center in Bethesda, Md., announced in September that they would use the cell lines obtained from the Hadley children to begin identifying drugs to treat NPC. Ultimately, by working with other patients who have orphan diseases, the scientists at the John Paul II Stem Cell Research Institute plan to create a bank of disease-specific stem cells and provide hope for many other families like the Hadleys.
LIVING WITH FAITH
With a little more than 100 cases of NPC in the United States, the Hadleys have found it easy to network with other families struggling with the disease. "We have talked about it with other families. They share our opinion on the issue, and are assisting in pushing adult stem-cell research," Bryan said. The Hadleys are aware that others are looking to embryonic stem cells for a cure to NPC, but knowing that they and other families are witnessing to the truth serves as yet another sign of hope in their ordeal. "Based on recent history, adult stem cells are not only the ethical choice for stem-cell research, but also have proven to hold the greatest promise to treat and cure rare diseases," Laura said.
So far, Kayla shows no perceptible signs of her disease except for an enlarged spleen. Peyton, though, is "much farther along," according to the Hadleys. "He has many of the main hallmarks," Laura said. "He has the slow gait, and without a cure, eventually he'll be in a wheelchair and then bedridden with a gastric tube inserted to help him eat." Nonetheless, Peyton still attends the Hadleys' parish middle school and plays on the school's basketball team. "He's not able to take tests, but he still enjoys learning and paying attention," Laura said. "He especially likes to learn about history and his faith. There's not a day that goes by that he doesn't tell us about the saint of the day."
Kayla is currently in fifth grade and stays busy playing the saxophone and attending dance class. Sometimes, it can be a real struggle working through her condition to maintain a mostly normal existence. "We can't have milk and have to drink rice milk," she said, describing their strictly fat-free diet. She added that she doesn't find school as difficult as the medical tests that she and her brother have had to undergo. "The IVs we have to do aren't hard, but they have to stick a needle in each time and it hurts," she said, adding that when things get tough, she asks her favorite saint, St. Thérèse of the Child Jesus, to intercede.
Stem Cells Explained with Dr. David Prentice
To help readers better understand stem-cell research and to address common misconceptions, Columbia interviewed Dr. David Prentice, an internationally recognized expert on stem cells and cloning. A doctor of biochemistry, Prentice was selected by the U.S. President's Council on Bioethics to write their comprehensive review of adult stem cell research in 2004. He is also a founding member of Do No Harm: The Coalition of Americans for Research Ethics and senior fellow for life sciences at Family Research Council.
Columbia: What are stem cells and what are the different types?
Prentice: Stem cells have two chief characteristics: They continue to grow and divide so there is always a pool of cells available, and they can change into any of the various tissues of the body. There are, at present, three types of stem cells. Embryonic stem cells come from young embryos about a week after conception, and you have to destroy that young life to extract them. Besides the obvious ethical problem, they also like to grow and try to make all the tissues at once. The end result is that after 30 years of research with embryonic stem cells — first with mice and then with human embryonic stem cells — researchers still cannot control their growth. The cells tend to make tumors when injected into the lab mice. There are problems with transplant rejections and with forming mature, functional tissues. From a practical level, they are not very good cells for clinical treatments.
The second type is adult stem cells. We are born with them and continue to have them in all of our tissues and organs. They are also in umbilical cord blood and in the placenta. There is no ethical problem with adult stem cells — you don't have to harm the donor. For several decades, adult stem cells have already been proven to repair and replace damaged and diseased tissues. They have been used for many treatments over the last five or 10 years, including spinal cord injury, juvenile diabetes, heart damage and dozens of other conditions.
Finally, there is a newer type of stem cell, a somewhat intermediate type. The technical term is induced pluripotent stem (iPS) cells. They are made by taking a normal cell, such as a skin cell, and adding a few genes that reprogram how that cell behaves. They look and act like embryonic stem cells, but they can be obtained ethically for laboratory studies. There are no embryos, no women's eggs and no cloning techniques involved.
Columbia: How many adult stem cell treatments are currently being used?
Prentice: There are at least 73 that have been verified by published scientific evidence, and there are probably close to 80 now. There were, at last count, more than 50,000 patients around the globe who receive adult stem-cell transplants every year.
Columbia: How much funding and effort is put into adult stem-cell research as opposed to embryonic stem-cell research?
Prentice: From the federal government there is more adult stem cell money than there is embryonic, although that is changing. Embryonic research, over the last nine years, has received more than half a billion federal taxpayer dollars, and its rate of increase is much steeper in terms of federal support. Most adult stem cell funding is not going toward the newer studies and clinical trials for things like heart disease, stroke and diabetes. Some states have poured billions of dollars into embryonic stem cells, whereas there is not nearly as much going to adult stem-cell research.
Columbia: Why is there so much focus on embryonic stem cells?
Prentice: I think the obsession with embryonic stem cells is primarily ideological and economic. It is perhaps interesting science for some people, but it is very expensive science. It has been sold to the public, as well as to legislators, with promises of all of the cures and the eventual economic return that will come, but essentially it is like selling snake oil.
Columbia: Why would there be more of an economic motive in embryonic than adult stem cells?
Prentice: You can patent embryonic stem cell lines. Everyone that is interested in embryonic research wants to have their own line of embryonic stem cells that they can patent and then reap the profits. Even if no treatments ever happen, any scientist or company that wants to work with those cells has to pay a licensing fee. It becomes a moneymaker simply to destroy embryos, grow the cells and then market those cells for more basic lab studies.
Columbia: How do laws and treatments in the United States regarding stem-cell research compare to those overseas?
Prentice: In the United States, at the federal level, there is no legal restriction for embryonic research or even for cloning. In some countries, such as Italy, it is against the law to destroy a human embryo, whereas there are very liberal laws in other countries, including the United Kingdom and China.
America is behind in terms of adult stem cell research and treatments. Germany, which since the early 1990s has prohibited destruction of a human embryo, is one of numerous countries around the world leading in terms of new adult stem-cell treatments. In fact, some U.S. scientists first did their adult stem-cell treatments in other countries because they could not get the funding or the interest in the United States.
Columbia: Are there any other big challenges facing adult stem-cell research?
Prentice: Because the media will often just say "stem-cell research" without using an adjective, people automatically assume they are talking about embryonic. Those who support embryonic stem-cell research then claim that the "other side" is against research of any kind. But we support adult stem cells. We support anything that does not harm or destroy human life. We support real science. Embryonic stem-cell research is an obsolete science and an unethical science. The sooner we leave it behind, the better.
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The true values this family displays is such an inspiration.
I often pray that I will never be challenged and have to make tough moral decisions, as I am afraid that I might not have the courage of this wonderful family.
God bless them!
Adult stem cell treatment ping!
Thank you for posting. Those researchers who work on the orphan diseases that cause so much misery to children and suffering for their parents are true heroes of medicine. May God bless their efforts with the adult stem cells with success, in Christ’s Holy Name, amen
Prayers lifted.
Thank you, both! It’s just as I thought.
“Columbia: Why is there so much focus on embryonic stem cells?
Prentice: I think the obsession with embryonic stem cells is primarily ideological and economic. It is perhaps interesting science for some people, but it is very expensive science. It has been sold to the public, as well as to legislators, with promises of all of the cures and the eventual economic return that will come, but essentially it is like selling snake oil.
Columbia: Why would there be more of an economic motive in embryonic than adult stem cells?
Prentice: You can patent embryonic stem cell lines. Everyone that is interested in embryonic research wants to have their own line of embryonic stem cells that they can patent and then reap the profits. Even if no treatments ever happen, any scientist or company that wants to work with those cells has to pay a licensing fee. It becomes a moneymaker simply to destroy embryos, grow the cells and then market those cells for more basic lab studies.”
Money...pure and simple...money. Did you know that the love of money is the root of all evil?
Then there is the abortion rights groups. They are so afraid that outlawing embryonic stem cell research will kill abortion rights. That right there is right up with the love of money.
Adult stem cell bump!
I pray God rewards their faithfulness by blessing their children with a cure, and by doing so, He will bless many other families!
“Let us pray with unending intention for an end to abortion and to the end to the production of the tiniest of victims for evil intent, in the guise of progress.”
With you in prayer agreement...
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