Stem Cell Debate
I share this story, running the risk of opening a can on worms. I’m okay with that, mostly because it’s my blog and I can share what I believe. But I am always open to hearing the points of view of other people, in a respectful manner, of course. Did you watch 60 Minutes last night? The first segment was on the use of stem cells. It’s something that is a familiar topic to me because there are people I know (online and in real life) who have gone to China to have stem cells injected into their children in hopes that their children’s vision will be restored or improved. These children, like Emma, have Optic Nerve Hypoplasia (ONH) . The difference is the amount of vision. Emma is lucky in that she has unilateral ONH; she only has it in one eye. And fortunately, her “good” eye has near perfect vision. So while she’s technically blind in her “bad” eye, you wouldn’t really be able to tell. What if Emma had bilateral ONH…would we take her to China? I don’t see that happening, but since I’m not in that situation, I can’t really say.
Given the information I have now about stem cell research, and what they’re doing in China (or other countries such as Mexico and Ecuador), I’m pretty sure I wouldn’t take her to any other country to receive stem cells. Emma’s neuro-opthalmologist, Dr. Borchert in L.A., has very strong opinions on the stem cell therapy going on in China. I’ve asked him about stem cell therapy in China, as I was just curious. He says that stem cell therapy is the most promising form of therapy for ONH, however it is not even close to be used in humans yet. He promises that it is coming, though. What they’re doing in China, basically experimenting on humans, is considered unethical in the United States. You can read more about his statement on stem cell therapy here. There’s another good story on stem cell therapy in China here.
Something interesting to keep in mind about ONH. Vision cannot get worse with ONH. In fact, more often then not, vision can improve during childhood years. And Emma is living proof of this. At her last appointment, she went from seeing solid objects with her “bad” eye, to being able to see which direction the E is facing on a wall 15 feet away. We have no answers as to why this happens. But with good news like this, I don’t really need a reason!
Watch this story on stem cells from 60 Minutes and let me know what you think. I am very open to a respectful discussion on the subject. Feel free to leave a comment or post on my Facebook page, Jumping Waves.
On a lighter note, if they had stem cell therapy for mood swings, possessed children, or ADHD, I might consider it.
Interesting article. As always, I enjoyed your blog and point of view.
I believe there are some conspiracies against good treatments (see http://youtu.be/1qG_ZWs04es).
In the case of stem cells however, I think that expert is right, we are at least (emphasized) 10-15 yrs away from having any significantly effective use.
I believe that this show emphasized, within the first sentence, the point: desperation. People with SpNeeds kids want hope. I believe that hope is out there . . . but like any other treatment, you have to give the research time. Parents looking for treatments out of desperation may not find what they are looking for, which may be a cure; but in some cases, I believe it is just peace of mind that they are doing all that they can. Actually nix that, all that is humanly possible, for their child.
I love our PCP. He has an autistic spectrum child of his own. And one of the things he said at our first visit, which surprised me, was “People need to stop thinking these kids need to be fixed.”
And there was something about that, which gave me to understand, he really got it. Even though this body in which my child is living is somehow making his life (and mine) more difficult than the average, that doesn’t make him less of a person. In fact, he may be much, much more – much stronger and intelligent than the rest of us – in order to have the patience to live in this manner.
So while our PCP likes to discuss ideas, therapies, pros and cons, frustrations, etc., he in no way believes my child is less, which helps me, knowing we are on common ground.
afterthought:
I take a lot of comfort, hope, wild joyful anticipation, that we have brain mapping now and genome sequencing that makes it realistic (in the next 15-20 yrs), that we will have research based, effective treatments for bipolar disorder. Because even the best docs will tell you, until 3-5 years ago, you couldn’t get a serious neuroscientist to do research in this field, because the science simply wasn’t available. So what that quasi-quack doctor working out of Equador was saying, “No one really knows how it works” is exactly what we’ve been doing with the standard protocol treatment for bipolar for years.
Hope is a great thing.
I regularly tell people, I’m glad that in education today, my child isn’t experiencing what children with cerebral palsy did years ago. (Good) educators would never consider slapping my child and telling him to sit still and stop flailing, as once used to happen to those kids. We’ve come too far. But we have a long way to go (such a long way).
We are always making progress; but in truth, many times it exists because we’ve seen the mistakes others have made, and vow to look for a better way. So I have great appreciation for all those parents that did what was necessary to bring us closer to parity in SpEd. I don’t know that I will ever fully believe that and Individualized Education is possible in public school, but parity may be realistic (in time).
If the bureacracy in medicine and education is similar though, the tracking and paperwork alone . . . sigh
I just came across your page, of course doing research on stem cell theraphy. I have a daughter who suffers Traumatic Brain Injury from a car accident. I, no different then many other parents want our children to have a quality of life and with the success stories I have read, and talking to parents on the phone, the stem cell theraphy is definatley an option. The world is NOT perfect and I realize there are people out there that are going to try to make money off of it. I really dont want to have to go to another country to have it done, but with the FDA we have no other choice. I am upset that with all the success stories that I have read, why it hasnt been approved. It can save many many people from suffering. Just my opinion..
Thanks, Fred!
Marnee, I agree!
Diana,
I’m so sorry to hear of your daughter’s injuries. I hope that you’re able to find the treatment best for her, whether it’s stem cells or another form of therapy. I am really most educated regarding stem cells used to help Optic Nerve Hypoplasia, which is what my daughter has. I’m not sure how much further other stem cell therapies have come. to know that it will come to the US is good news…but for the parents of the kids who could benefit, it seems like it can’t be available fast enough. Best of luck and thank you for your comment!