First of all, why the DR? Simple, because we can't do it in the US. The FDA needs to do testing before stem cells are approved in our country. And such testing is barely being allowed because of the political landscape of our country. If the FDA is ever allowed to do complete testing, by the time it was all approved, it would really be too late for Soren. Due to his developmental delay, we feel we need to do as much as we can as soon as we can. We can't wait until he's 20!
So the choices for getting stem cells are out of the country. Mexico does some injections, but the stem cells there are fetal stem cells, not embryonic stem cells. I think there are places in the Ukraine that do embryonic stem cell injections--but that's even further! So, the DR it is.
What's the difference between embryonic and fetal stem cells? Embryonic stem cells are harvested in Eastern Europe from aborted embryos that are between 8-12 weeks old. At this stage, it is believed that the stem cells are pluripotent. This means that at this point of development, they can become anything. This is where doctors in the US are worried. Their fear is that if the stem cells can become anything, why can't they become cancer? Not to be cavalier, but for us, cancer is the least of our worries. We'd like our son to walk and talk some day. Fetal stem cells are further along in the process developmentally, so the thought is that they have less potential to fix the body. That's why we go for embryonic stem cells.
Why Eastern Europe? Well, abortion is a common and accepted form of birth control there. The women are approached, from what I recall, when coming in for a 2nd abortion. They are asked if they would like to donate the embryo. If they say yes, testing is done on the woman for Hepatitis B and HIV. The stem cells themselves then undergo further testing to make sure they are not contaminated.
How do they work? Theoretically, the stem cells get into the body, find the problem, multiply, and fix it.
How are they given? Soren is given two injections: one intravenously (in a vein) and one subcutaneously (in the muscle). Another good thing about stem cells is that you don't have to find a match, as with bone marrow transplants. With stem cells, one size fits all.
But more controversy crops up regarding how the stem cells are administered. Doctors in the US don't think that the stem cells can cross the blood brain barrier to the brain. Thus, for brain problems, they feel that the stem cells would have to be injected into the spinal column in order to make it to the brain. But I know plenty of people who disagree. Me, obviously, for one. And I have met many people in the DR getting injections for themselves or their kids who disagree. And if you met Clayton, the boy I wrote about before, you would disagree too.
Who does them? It's all arranged by a Los Angeles-based doctor named Dr. William Rader. Now, I'll be honest, if you do a web search on Dr. Rader, you'll find rather disparaging things. He's on quackwatch.com. He's had articles written against him in various newspapers. Believe me, we've heard and read it all.
But, more importantly, we've witnessed Clayton first hand. And when you have that, all the disparaging remarks disappear and Dr. Rader becomes your shining beacon. Yes, in many ways, it's a leap of faith. But we feel that this leap has paid off and, with subsequent injections, will continue to do so.
Why so much money? Yes, the first injection was $25,000. Each subsequent one is $8,500. That in itself is a lot of money. Add in travel and lodging, and you have an expensive medical trip. One reason, I think for the high price is the screening process. You want clean stem cells and doing that, running the facility, costs money. Second, think of what your medical procedures would cost if you didn't have insurance. It would be a pretty penny, that's for sure. Until it's legal in the US and paid for by insurance, this is the cost for our possible cure.
Now, if you want to read the good, go to Dr. Rader's sight at
And, in all fairness, if you want to read about the bad, go to quackwatch.org for a
But whatever you glean from this information, know that for us, stem cells, like Obi-Wan, are our only hope. That is why we are going back in December and, with your help, again next May or June. We feel that the stem cells are, indeed, mending the problems in Soren's brain. And with the seizures stopped, we are hopeful for Soren's progress.
Thank you for all your support!
Amy
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