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June 3rd, 2009
06:16 AM ET

U.S. patients try stem cell therapies abroad

Sierra Journey Factor, 8, has a muscular disease that her mom, Shaylene Akery, hopes can be treated in China.

Sierra Journey Factor, 8, has a muscular disease that her mom, Shaylene Akery, hopes can be treated in China.

By Drew Griffin and David Fitzpatrick
CNN Special Investigations Unit

TITUSVILLE, Florida (CNN) - It's shortly after 5 a.m. when the phone rings, and on the line is a clearly anxious and worried parent.

"Sierra is having a lot of problems tonight," Shaylene Akery tells a CNN producer. "We have to take her to the hospital, but we still want to talk to you about her trip to China."

Her daughter, Sierra Journey Factor, is 8 years old and has a terminal disease called Type 2 spinal muscular atrophy, a genetic disorder that affects parts of the nervous system that control voluntary muscle movement. In addition, she has a restrictive lung disease and a kidney disorder. She has used a wheelchair since infancy.

Sierra's mother, her stepfather and her biological father, A.J. Factor, all know that Sierra is seriously ill. On the morning we met them, Sierra was treated at two hospitals before she was stabilized.

But the family is convinced of their next step - taking Sierra on an arduous trip to southern China, where they believe the little girl will be injected six times with stem cells during a 34-day stay. It's the kind of treatment not yet approved in the United States by the Food and Drug Administration.

Sierra's treatment will cost $26,500, which does not include the cost of travel and living for the extended family. Those costs would mean an additional $25,000, according to Akery.

"We are really walking into this blindfolded," Akery said. "It's scary, but everybody says it's so nice over there."

The family says it got most of its information from a Web site called China Stem Cell News, at stemcellschina.com, which boasts of dozens of anecdotal testimonials from loved ones who say their children or family members showed improvement after the stem cell treatments. The site offers no scientific evidence and no means of making contact except through a Web form. CNN used the form, but as of yet has received no reply.

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Filed under: Health
soundoff (5 Responses)
  1. Shay Factor

    I am the Mother of Sierra Journey Factor and I just want to be sure I Thnak CNN (NOT) for their Awesome EDITING job so that we said ONLY what THEY wanted us to say ... Thanks for making us look like idiots and Thanks even more for giving the Public FALSE Information .. Seems to me that you need a new special investigative unit .. BOO Drew Griffin thanks for your investigating you did no such thing you didn't even look into or research you just took our interviews twisted them and lied about the rest! So THANKS CNN for exploting our daughter while we were at the hospital as it was .. you took a crappy time in our lives and made it even more! You used Sierra Thanks CNN you guys SUCK!

    June 8, 2009 at 8:47 am |
  2. Adair Watters

    As a caregiver to a 22 year old C-4 Complete Quad, I see frequent updates on the subject via keyword searches, and would would jump at the chance to restore significant sensation or movement from any therapy.

    Often there are reports of spinal cord injury (SCI) patients going to Portugal, China, India, G B, etc. to receive treatment based on hope alone, rather than good scientific evidence. Where are the studies showing results from these countries, doctors or treatments? They don't exist or are hidden because they are inconclusive.

    Hope is a strong motivator, but it will be a cold day in hell before we invest $ 30,000, $ 50,000, or $ 100,000 in some unproven treatment.

    On the other hand, we would gladly consider participating in an expirmental program if all facts were made available for us to make an informed decision.

    I have faith that a fix for damaged spinal cords will happen, and I hope in my sons lifetime, but I want that fix to be developed under a medical system that protects patients rather than exploits them.

    June 3, 2009 at 9:57 pm |
  3. Ryan E

    Wow CNN, way to be totally biased and one sided. No wonder this network is going down the drain to MSNBC and FOX. Its garbage reporting like this thats bringing you down in the ratings. Stem cell research shows alot of promise, and many, many people have benefited from its treatments.

    Drew I absolutely love how you take a potential feel good story about some 8 year old little girl and totally shatter their hopes and dreams. I hope you never have to experience a loved one going through these types of problems. My father sufferes from very serious illnesses also, which stem cell treatment might help. You have to have a little bit of hope and faith, obviously your network believes in neither.

    And Lou, please go away, seriously if you don't have anything positive or constructive to say, then just stay off the TV. It must be so nice to be able to sit back and be "independent" when you're not responsibile for anything other then reporting your "opinion". You sir are a complete hack.

    I have watched CNN for several years, but I can tell you I will never watch your network again after watching how you crush some little girls dreams and hope. Why don't you pick on someone your own size.

    June 3, 2009 at 5:08 pm |
  4. Marc Romano

    Nice one sided reporting. Where were the people who have benefitted from stem cell treatment? A member of my family has MS and has tried traditional medicine for MS. It has not worked. True it may prove helpful to some, just as stem cell treatment may also prove helpful to some...but there are thousands of others who do not find relief with FDA approved drugs. The pharmaceutical companies have the medical profession in their back pocket and stand to make billons off their "potions." The doctor in your interview appeared smug and arrogant with her dismissive view of stem cell treatment. Yet, she and all the other medical professionals have no treatment for ALS, MS, Alzheimer's Disease, Parkinson's Disease...if the current drugs on the market REALLY DID WORK...we would see a lot more people benefitting from them....it is no more a scam then what she believes stem cell treatment to be....

    June 3, 2009 at 7:43 am |
  5. Mitchel

    Good morning Kiran and John,

    This is an email based on my reading, and experience, and feedback. I see how people are naive about "doctors" of alternative medicine. So, I believe in the power of the mind, and alternative natural food, herbs, acupuncture etc, but only as it applies to an individual who learns about their own body. This is critical to success in treatment.

    Hello friends and family,
    I have been reading about how so many people here in the US are given false hope and promise for alternative medicine and treatment. I don't like being a dad and giving advice, but let me be one for a minute, because it seems necessary.

    First of all the basic rule is to get informed, and learn all about alternative health practices and what they have been shown to do, and how each can help you in your health. There are many good ways, aside from traditional medicine to heal yourself of various ailments, if you research them properly, and also research the people who propose to offer them to you. You must have knowledge before you go to a doctor who offers non-traditional ways of healing.

    Second of all, alternative healing requires that you have strong mental power over your body, and mind. This means that you must be able to "talk" to your body and command it in specific ways, to heal yourself. It is all about "mind over matter" my friends. Your mind is more powerful than you know, if you harness this power. This involves you "listening" to your body when it has signals of not feeling right, or healthy in subtle ways. This means mentally telling your body, by meditation, to attack viruses, and heal itself, by visualizing the area of attack that you want to make. This also means, eating good, healthy foods that cleanse your body of toxins that we all take in as a result of our chemical laden diets in our modern society. You must meditate, talk to your body, and mentally "see" the areas that you want to purge of toxins. So, you must have quiet and peace in your surroundings to focus on this properly.

    Third of all, is that there are lots of healthy teas, and herbs, and foods which are good to purify your body of toxins and also things which make you feel bad in all sorts of manners. But you must read, and learn about life plants, herbs, and other foods which are healthy -in modesty- to really find your balance in your own chemical make-up as a human. Each of us are the same in most ways, but we are still chemically different, and the food we eat is critical to our well-being.

    Fourth is that not all doctors who promote healthy eating and alternative health are the same. Acupuncture is excellent...in the hands of a qualified doctor. So are the healthy diets they propose. But some are "Quacks", and not qualified in their education to give advice. So, research them all before you trust them... learn about their qualifications... background in their "proposed" expertise. There are many alternative doctors who know their "stuff". But the fact is, that there are many fake doctors who are not qualified in alternative medicine, and/or are just trying to make money. So, "buyer beware". You must learn about healthy foods, meditation, and the power of your own mind, so then you can see more clearly if you are in the company of an idiot. It is that simple. Ideally, in time, you learn enough about all that nature offers, and your own mind's ability to focus on killing viruses, and disease, that you don't need a doctor. This will be the
    next
    step in our evolution.

    June 3, 2009 at 6:44 am |