Daegan's chance to see

EAST PRAIRIE, Mo. -- Paige and Jason
Cape Girardeau Southeast Missourian

Wednesday, November 28, 2007By Sam Blackwell ~ Southeast Missourian
EAST PRAIRIE, Mo. -- Paige and Jason Archie don't have to reinvent the wheel in their quest to help their son Daegan see. Dawn Barlett and her daughter Rylea already did that.
Like Daegan, 6-year-old Rylea was born with optic-nerve hypoplasia. Because her optic nerves did not develop normally during pregnancy, she was blind and could not detect light. Like Daegan, Rylea was given no hope of ever seeing. But in July, 10 days after Chinese doctors transplanted stem cells into her spine, the Webb City, Mo., girl began responding to a light. Last August, Rylea made out her mother's face for the first time. Doctors in China had told the family not to expect to see any change for three to six months. Rylea's eye doctor evaluated her vision at 20/400 and was astounded as anyone to see a patient with optic-nerve hypoplasia develop vision. "This is the first case ever -- since the Bible -- where someone's sight has been restored," he told the Joplin Globe. Paige Archie called Dawn Barlett after reading an Associated Press story about Rylea in the Southeast Missourian. They spoke for hours. "I wanted to know everything," Paige said. After talking to physicians, Paige and Jason became determined to give Daegan the same chance to see. That chance will cost $60,000. They discovered the stem-cell injections will cost $20,000 and the hyperbaric oxygen therapy to help the nerve cells grow after Daegan returns home are another $26,000. The 27-hour plane trips to and from China and expenses in remote Hangzhou will account for the rest. Daegan's grandmother, June Maxey, began spearheading a fund drive. Southeast Missourians have responded, particularly civic clubs in the East Prairie and New Madrid areas. So far they've raised enough money to pay for the injections. The Archies didn't know anything was different about Daegan until he was 3 months old. Their family physician said he was not tracking objects, and a pediatric ophthalmologist determined that his optic nerve never fully developed. "They said there was no hope," said Paige, who is a nurse. "They said there was no cure." One Cape Girardeau doctor, however, told them the only way Daegan could see is if they were able to regenerate nerves. But she told them that would not happen in the U.S. anytime soon. Then Paige saw the newspaper story about Rylea. Daegan is two years younger than Rylea, which doctors said is an advantage. "They say the younger the better," Paige said. More information about the treatment program is available at stemcellschina.com. Daegan loves Dolly Parton's voice and the programmed music that comes from his electronic keyboard. "Old McDonald Had a Farm" makes him smile. He is fond of swinging and trips in the family truck. "He likes to go for a ride and roll the window down and feel the wind," Jason said. Three-year-old brother Jase is protective of Daegan, making sure his parents know when he is hungry or thirsty. Daegan didn't walk until 18 months. His overall development is behind that of other 4-year-olds. The Archies think blindness is the reason. 'We really grew up' Jason and Paige were just out of their teens when Daegan was born. "We really grew up," said Jason, a farmworker. They went through the same discovery process Dawn Barlett did in trying to find help for their son. Last year they visited the Alabama School for the Blind a number of times and were prepared to relocate to Talladega. But officials at the school said Daegan needed to develop more before he would be ready to attend. They are prepared to move to St. Louis to get specialized schooling for Daegan if the umbilical cord stem-cell transplants fail. But the Archies and community and family members helping them aren't contemplating failure. They're selling "Daegan's Mission" T-shirts and pens and holding bake sales and raffles. A trust fund has been set up for him at Focus Bank's Southeast Missouri locations. In Cape Girardeau, Houch's Donuts on North Kingshighway is selling window decals to benefit Daegan. The Web site daegansfightforsight.com provides information about the family's mission and will post journal entries from China. All four members of the family will be there from June 1 to 20. Paige and Jason searched the Internet for children's names before deciding to christen their first-born Daegan. "We wanted something different, and by goodness we got it," Paige said, smiling at her son.

Institute of Regenerative Medicine Closed in Scandal

It was back in late 2005 and early 2006 that I first reported the “stay away” message on this group yet still from time to time people would bring this place up on the boards as a viable option for treatment. I think we all need a reminder that it is not safe to take your child or loved one to just any stem cell provider who has a slick web site and offers a lower price. There are so many people and places out there that want to take advantage and we must be very careful. The claims below about the intentional early delivery of babies who were then used as a harvest resource seem outrageous and unreal but this is not the first time I have heard of this. The story about new born infants disappearing has also been reported by other news sources and there does seem to be some evidence behind the claims.
It is indeed cases like this that lead to fear of all stem cells. These reports are yet another indictor as to why we must stay away from clinics that use fetal stem cells. The use of any such product on any basis will only lead to abuses like those reported below.
Anytime you or someone you know is considering trying out a new clinic and or doctor please check the databases very carefully. It is not uncommon for these clinics to be shut down only to have those involved move onto a new country and set up shop again under a new name. Be very careful and do your homework, talk with others both patients and those involved in the business of stem cells. There are a few of us that are honest and sincere about our work unfortunately we are rare among the general population of those working in this field.
Kirshner

Institute of Regenerative Medicine Closed in Scandal
Stem cell clinic closed
Published on: 11/26/07.
by Sanka Price

BARBADOS IS NO LONGER in the controversial stem cell treatment business.

The Institute of Regenerative Medicine (IRM) which was named in a critical British Broadcasting Corporation (BBC) television report last December as one of the clinics using stem cells from aborted foetuses and dismembered babies, closed in May. Its closure brings to an end four contentious years of operation here.

The clinic, which was located at Hempstead, Two Mile Hill, St Michael, was forced to close its doors because business slowed after the BBC investigation was aired, said Professor Yuliy Baltaytis, the IRM's scientific director.

"The brutal attack of the BBC and the British papers ruined our business," said Baltaytis, who spoke to the SUNDAY SUN from New York.

The BBC documentary aired last December 12 and was re-screened on BBC World News on December 13, claimed that stem cells in the city of Kharkiv, Ukraine in eastern Europe were not only procured from aborted foetuses in the first trimester, but that healthy living babies may have been delivered through induced labour at two weeks'
gestation, killed, their bodies dismembered and their internal organs and brains removed for the harvest of stem cells.

Video footage of exhumed bodies detailing this barbaric practice was lodged with the Council of Europe. The Council of Europe had already investigated the maternity clinic in Kharkiv at the centre of the allegations in August 2006 and expressed its extreme concern about "the disappearance of new-born babies in the country and allegations of trafficking of babies for adoption and of foetuses for scientific purposes".

The Institute of Cryobiology in Kharkiv, that supplied the IRM with stem cells, refused to be interviewed for the BBC documentary.

Baltaytis, a Ukrainian, reiterated his condemnation of the British reports saying: "The European Commissioner said that no crime was being committed in Ukraine. They said the BBC report and Daily Mail reports were not true."

The professor, who established the first stem cell clinic here in
2002 - a rejuvenation clinic called "Vita Nova" at Villa Nova, St John, which was rebranded the IRM in 2004 - said he no longer worked for the company, and was trying to set up his own business, possibly in Europe.

Baltaytis said he would like to return here, though he couldn't say how soon he would. "I like to work in Barbados. I have some patients over there."

As to the allegations that IRM skipped the country owing their former landlord $8,000 rent; their employees', salaries; and other companies money for services provided, Baltaytis stoutly denied this.

"We paid everybody. The only one we may owe is the telephone company," he insisted.

"I personally delivered cash to [the landlord] from our chairman, Mr Irme Pakh. ... We paid staff not only money but told them they could take the furniture," he added.

A staff member however disagreed with Baltaytis. The person told the SUN an affidavit was signed by the professor agreeing to pay the National Insurance Scheme (NIS) the deductions taken from their salaries over the last two years. That apart companies were calling about monies owed.

"It is just a complete mess," the former employee said.

Quizzed on the NIS payments for staff, Baltaytis said he was "not a financial officer of the company, so I have limited knowledge. I was scientific director".

Both Cable & Wireless and the National Insurance Scheme declined to divulge information about monies owed by the IRM; but the former confirmed the service had been disconnected.

Pair Hope Stem Cells Will Let Them See

The News-Leader By Donna Baxter

Man, boy both plan to go to China for umbilical cord stem cell treatments.
Ten-year-old Austin Anderson and Carl Stevens, 57, have never met, but they share more than their blindness. Both have hope that umbilical cord stem cell treatment available only in China will give them their vision.
The treatment is expensive, but both families are willing make a month-long trip and spend more than $40,000 to help their loved ones see.
"For 10 years, there was no hope, but now there is," said Kimberly May of Bolivar, mother of Austin, who was born blind.
Stevens, who lives in the southeast Christian County community of Garrison, lost his vision four years ago during a battle with strep B pneumonia.
Doctors in the United States have given neither of them any hope of recovery.
Umbilical cord stem cell treatments are limited in the United States because of FDA regulations and other processes, according to Kirshner Ross-Vaden, vice-president of foreign patient relations for Beike Biotechnology, the company that provides stem cells for treatment at 11 hospitals in China and one in Thailand.
Both families have expressed their opposition to abortion and use of embryonic stem cells from aborted babies, but the Chinese technology uses only cells from the umbilical cord blood of live born babies.
Ross-Vaden said the company uses umbilical cord stem cells only, three subsets, geared to neural tissue.
"We transplant up to 15 million cells by two delivery methods — one is intravenous and the other via lumbar puncture into the cerebral spinal fluid," she said.
Chinese doctors have treated several people, including Rylea Barlett, 6, of Webb City, and 19-month-old Cameron Petersen of Port Charlotte, Florida both with positive results, their parents report.
Dawn Barlett reported that her daughter responded to light one week after initial treatment and can now see freckles on someone's face.
Cameron began to stand on his own and crawl toward objects by the third treatment — things he'd never done before.
Austin Anderson
Austin was diagnosed at 3 months old with optic nerve hypoplasia, a birth defect that prevents him from even seeing light.
His mother remembers holding him and sobbing for days after the bad news.
"I kept crying, 'He's my baby. Why couldn't it have been me instead of him?'"
Austin's maternal grandmother, Awanda Lightwine of Monett, said she noticed one day that the baby did not react to the sun shining directly in his eyes. When she shaded his face, she saw his pupils were dilated.
"This baby can't see," she said.
Austin's parents rushed him to the doctor, where a CAT scan also revealed a pituitary defect that causes growth delay, septo optic dysplasia. He now takes daily steroid shots and hormone pills for his growth delay.
If he could see, Lightwine said, it might draw him out of the autism that also surfaced as he got older.
His grandmother describes Austin as a "such a sweetie."
"I can't imagine what it would like to be blind and autistic. His family loves him to death and we're willing to go to the ends of the earth to help him," Lightwine said.
His other grandmother, "Mee Mee" Debbie McGinnis of Bolivar, said she fixes his favorite foods with as many calories as possible on weekends when he comes home from the Missouri School for the Blind in St. Louis.
"I pile the butter on the mashed potatoes ... he's so light ... he needs to have some muscle when he goes for his surgery."
May, 33, a single mother of three, has set a goal to take Austin to China by March — if she can raise the money.
"If we don't have the money then, we'll wait to go whenever we do have it."
May said Austin's eye doctor Scott Atkinson has "an open mind" about the treatment.
"If there's any hope, this is going to have to be it," she said.
Friends, co-workers and family members have several fundraisers in the works to help raise the $25,000 cost of the treatment plus $15,000- $20,000 for travel and living expenses in China.
Four children with Austin Anderson's diagnosis have been treated to date, with a fifth scheduled for December.
Carl Stevens
Stevens thought he just had the flu when he didn't feel well for several days in January 2004.
"I kept getting sicker and sicker until I finally decided I'd better go to the doctor," he recalled.
After receiving fluids, his oxygen level was still too low, so he was taken by ambulance to Cox South hospital. There he was told he needed oxygen for about 48 hours and then could go home.
Instead, Stevens' condition plummeted and the medical team induced a coma to keep him still.
At one point, his kidneys shut down; 18 days later, Carl said, "I woke up and I was blind."
He had developed septic shock and toxic shock syndrome, his wife, Vickie, said. The infection spread into his blood and he was given about one-half of one percent chance to survive.
Carl recalled: "When I woke up from that coma, the first thing I remember was the kidney doctor saying to me, 'I've been here 30 years and you're the sickest patient I've ever had that lived.'"
Vickie remembered his doctor said Carl's blindness was caused by ischemic optic neuropathy.
"When the nurse told me he had a vision problem ... it was just one more knockdown after we thought we'd gotten through ...," she said, her voice trailing off.
But then she heard a harpist playing "Amazing Grace" down the hall from Carl's hospital room. Vickie remembered the lyrics, "I was blind but now I see."
"I believe this was our sign... He's going to see again this side of heaven," she said.
Carl — who'll be the first patient treated in China for his diagnosis and the second adult to be treated for an optic nerve disorder ?leaves for Hangzhou City on Christmas night from Houston, Texas, with his brother-in-law, Paul Clevenger. After a 27-hour flight, they will check into Hangzhou Hospital on Dec. 28.
Vickie cannot go because she is undergoing chemotherapy to treat breast cancer.
Carl walks almost three miles a day and lifts weights to keep him self in top condition, he said.
He has a talking computer from Services for the Blind to conduct his business raising Pomeranian dogs and has learned some Braille. He also does housework and helps with the cooking, Vickie said.
Carl's health and physical condition are among reasons the hospital in China accepted him for treatment, Vicki said. And because he has had vision, his nerve receptors know how to receive all those messages. Patients who have never had vision ?like Austin — must develop those receptors and learn, she added.
After Carl returns home from China, he will require follow-up treatments five days a week for months, an added cost of $15,000-$20,000.
Gene Ridings, pastor of the Stevens family's church, Chadwick First Baptist, said Carl and Vickie have been an inspiration to the church and community.
"Their lives are certainly a testimony," he said. "We're praying for another miracle because just him sitting here is a miracle in itself.
"I believe God works through medicine and doctors and the talents he has given these people. We believe God's working through the people of Chadwick and other places and he's going to help Carl get his miracle through prayer."
Carl said he has often been asked how he kept his faith.
With tears in his eyes and his voice quivering, he said, "I can't imagine how anybody could go through what I've gone through — let alone what other people have — without believing in God."
Vickie said she was thankful for the children who have already been to China for the treatments. Stories about their success have been encouraging.
Ridings said, "If we'll give the Lord half a chance, he'll lift us up ... I'm looking forward to going deer hunting next season with Carl."
Carl is planning to watch his daughter graduate from Forsyth High School in May.

Hopes most fragile state

Hope’s Most Fragile State

When is it wrong to provide hope?

I deal with hope everyday as do most of us on this planet. In addition to my own personal hopes I also deal with the hopes of others. I am in a way in the business of hope. It is part of my job to give hope and sadly some days it also my responsibility to take away hope. Daily and even sometimes hourly I find that I must somehow quantify and measure the elusive state of being; hope. I must ask myself; how much should I have for a person? How much should I allow another person to have? It is like trying to calculate an exact amount of air to into a measuring cup. Working within the cutting edge of medicine with what is literally the fastest advancing and arguably the most promising field of science in medical history I find I am the one often turn to in desperation. The clinical applications of Umbilical Cord derived Stem Cells is my specialty. Saying it is serious in nature would be of course a gross understatement. For many it translates into the quality of life in essence to live longer or to die. It is my daily task to answer questions about the worth of life, the functionality of life and the length of one’s life.

The desperate come to me daily with at least some small fraction of hope and for others endless amounts. The mere nature of my work allows hope even for those who may have been told to never have hope. They see my face on their television screens, many hear of my name on the internet seeking out information and literally looking for hope. Many find linked to my name a spark of hope kindles inside their pained hearts. I deal with many souls for whom I represent the last small fragment of hope. For some I can take this hope, cradle it softly and with a whisper encourage it to grow in slow measured amounts all the while safely shielding it in gently cupped hands. For others I can do nothing. It is for them that I must slowly open my hands allowing their hope to fall away. It sadly slides over and through my opening fingers, like a fine dust blown by the wind it disappears back into the blackness of desperation and loss. For me it is a strange mixture of science and faith. It is the business of medicine that bring with it a secondary challenge; the measuring of hope.

Be it however intangible hope itself is the right of each and every individual. To have it, to not or to what extent is an individual’s choice and one we all have the right to make. Hope as a verb indicates an action of wanting or expecting. As a noun it translates a confident desire, an intangible feeling that something is likely to happen. Hope is in essence a wish and or faith that something will happen or be possible. To have hope is our right as individuals. We also have the inherent right as an individual human being to make a choice as to in what we hope. One rather lesser known definition of hope is also trust or more accurately a feeling of trust. It is this trust that can bring us into the debate of who has the right to ask for a persons trust and to what degree is providing this elusive hope appropriate.

In medicine we often find it is this fine point that is the subject of much internal debate for caregivers and patients alike. When can we provide hope and is it humane to ever say there is no hope. We have all heard of medical marvels termed as miracles. Knowing such cases do exist one could argue that there is always hope to be found. Yet as human beings often do with something immeasurable by touch we attempt to qualify it by providing a mathematical scale. Hope is measured everyday in hospitals all over the world. We as practitioners of medicine subjectively measure and translate it for patients and their loved ones on an almost hourly basis. Lacking a better way we reach for numbers quantified in odds and percentages. Reaching back to any supportive data we can recall from lesson’s years before we quote the odds of successful outcomes but even this is still nothing more than an objective statement. We hide the hide the fact that it is really nothing more than an opinion by providing numbers and drawing on our education and personal experiences but still it is nothing more and nothing less than one person’s opinion. It is only that some of those attempting to quantify hope build their views on better foundations than others. Yet still is it right to make such statements? Could these statements mislead?

We know all to well that medical professionals are often wrong when they make statements about the percentage of hope one may have. They are human and thus despite their best intentions they can still be wrong and often are. We know and trust them and thus we accept what they say as true. We justify this in our minds using the knowledge that they have no reason to mislead us as they would gain nothing by doing so.

Now its time to flip the coin and begin the real debate; what of the private sector of medicine and the hope they might offer. Now the trust for which hope is based has just been turned upside down because those providing the hope now have something substantial to gain. This now brings with it the issue of the possible manipulation of a persons hope. I think we all can acknowledge that anyone manipulating a person's hope would be acting in an immoral and unethical manner. I personally think it is far too often the case that the private sector medical professionals prey upon those most in need. Some days it seems as no matter where one looks in the sky all that can be seen are the circling dark forms of vultures. With such a mass number and wide wing spans they seem to block the clarity of our sight. These birds of prey circle over those in pain and patiently wait as they calculate the time it will take for the emotional desperation to set in.

I also do not consider myself to be one of those birds although I do acknowledge that not everyone would agree. I have in fact refused to accept patients for treatment because I felt they did not have a realistic picture of what the outcome might be. It does happen that a person’s hope is simply not realistic and ethically it is my responsibility to check that. I actually have a question in one of the forms clients fill out asking "what is your hope in regards to this treatment". It is asked to ensure that thier hopes are indeed realistic. If the answer they give appears in anyway inconsistent with what is indeed realistic then I have not fully done my job and must then go back to them, working with them until I have confidence that they have realistic expectations.

Hope is a fragile thing and should always be handled with the utmost respect and consideration. The saddest days for me are those when I know I am a person's last chance for hope but still I must say no to treating them because I am aware of the reality that they will not benefit from the treatment I have to offer. It is a painful moment to remove an individual’s last ray of hope. It is not a responsibility I take lightly but rather one that weigh’s heavily in my heart. I still however will decline to treat a person if I do not feel there is a realistic possibility that they will benefit from the treatment. For me this is an emotional bit of business but none the less it is part of my job. I make every attempt to deal with this component with the greatest level of human sensitivity.
I in fact often ponder the concept and reality of hope as it is indeed such a huge portion of not only my job but also of my life. I would “hope” that my life experiences have enabled me to be aware of and respond to this issue with compassion and understanding.

Therapy offers Ray of Hope for Evans City Girl

November 1, 2007

Therapy Offers Ray of Hope for Evans City Girl


By Karen Roebuck Lexi Smith says she likes being blind. Even so, the 8-year-old Evans City girl says she really wants to see her cat, Jesse, more than anything. She hopes an experimental stem cell transplant in China next summer will give her that chance. "Even if it wasn't experimental, I'd be nervous about going to a foreign country and getting a treatment," said Lexi's mother, Heather, 30, who is trying to raise $50,000 for the treatments and trip. "I can't see myself not trying this. I think we'd be forever asking ourselves, 'What if we had tried this?' " Although umbilical stem cells are used in this country to treat more than 50 diseases, they are not used to treat Lexi's condition, optic nerve hypoplasia, an underdevelopment of optic nerves. Several months ago, Beike Biotechnology, based in Shenzhen, China, began treating children with the condition with stem cell transplants, and intravenous infusions of blood cord serum and a chemical that stimulates nerve growth. The company recommends hyperbaric oxygen treatments for three months after patients return home. A 10-month-old Kentucky boy is in China now, the fourth optic nerve hypoplasia patient to receive the treatment. Some American experts, however, express doubts about the therapy. The treatments likely will not work but should not be dangerous, said Albert Donnenberg, director of UPMC's Hematopoietic Stem Cell Laboratory and professor of medicine at the University of Pittsburgh School of Medicine. Donnenberg, who read the company's literature, sees three obstacles: The stem cells must get to the right place in the body, turn into the right type of cells and not be rejected by the immune system, he said. "They're giving such few cells, you wouldn't know (if they were rejected)," Donnenberg said. Dr. Richard Hertle, chief of pediatric ophthalmology at Children's Hospital of Pittsburgh, said he has seen nothing about Beike's work in medical journals. "I've looked at this, and I just don't see enough evidence to send my patients over there," said Hertle, who has taught and worked in China. "If this was really that spectacular, this would have gotten pushed through and been the lead article in the New England Journal of Medicine or the journal Nature." Hertle said the younger a child receives treatment, the better it tends to work. Treatments in the United States help blind children with optic nerve hypoplasia and other conditions gain some vision, although not by restoring the nerve, as Beike is claiming to do, he said. Lexi, who has limited light perception, turns 9 on Nov. 25. "I think, at this point, (Lexi) has an excellent chance of some vision recovery, given what we've seen with the other four children, although there are no guarantees," said Kirshner Ross-Vaden, Beike's Chicago-based vice president of foreign patient relations. Lexi is in the gifted program at Evans City Elementary School, part of the Seneca Valley School District. An aide translates her assignments to and from Braille. At 1 month old, she was diagnosed with the absence of the septum pellucidum, a thin membrane in the middle of the brain often linked to hormonal problems, which Lexi has not had, and optic nerve hypoplasia. "I was always told there was nothing that could be done," Smith said. She scoured the Internet in vain until Lexi's dad, Jeff Moraski, saw a news report about a blind man being treated with stem cells. Smith eventually found the story of Rylea Barlett, 5, of Webb City, Mo., who has optic nerve hypoplasia. After reading on Beike's Web site about its success treating brain injuries and other neurological conditions, Rylea's mother, Dawn Barlett, 30, e-mailed the company and asked if it would be willing to try the procedure on her daughter. Rylea, who had no light perception, began treatments July 4. She can distinguish shapes and some details, such as whether her mother is wearing glasses or lipstick, up to six feet away and has 2-400 vision, according to her mother. "Within two months, she grew 1 1/2 inches, where she hadn't grown in two years," her mother said. Beike formed two years ago to treat patients with neurological conditions with umbilical stem cell transplants and the company recruits American and foreign patients. The transplants are done at 11 facilities in China, two of which accept foreign patients, Ross-Vaden said. As of October 2006, Beike said it performed stem cell transplants on more than 2,000 patients with neurological problems, including Alzheimer's disease, brain injury, cerebral palsy and multiple sclerosis. "Stem cells are not a cure, and I think that has to be stressed. These cells are a treatment for a lot of disorders," Ross-Vaden said, "but they're not going to completely resolve or reverse something." When Smith read Rylea's story about three weeks ago, she said, "I just sat at the computer and I bawled. I was shaking, crying. There was hope." Her family immediately started raising money to take Lexi to China in June. "I think it will be exciting -- getting the treatment and being in the (hyperbaric) oxygen tent," Lexi said. "I'm excited about that, because I like tents, and it's like a tent." And she longs to see her cat, Jesse. "I'm a cat lover," Lexi said. "I have to see what cats look like."