Controversial
I could potentially be opening up a bag of worms here, and while I don’t intend to, I think it’s a hot topic that should be discussed in a healthy and respectful way. Now, if you reside in the SOD/ONH community like we do, the topic of stem cell transplants is nothing new. And, if you reside in that community, you know what a hot topic it is. It’s the same as talking about religion or politics…a very sensitive and controversial topic.
To switch gears and give some background, Emma sees Dr. Borchert in Los Angeles every year. We are SO blessed to have an amazing physician who knows SO MUCH about Optic Nerve Hypoplasia (ONH) so close to home. We always take the opportunity to create a little girls getaway, just me and Emma, and this year we’re headed out there in November!! You can read more about our visits with Dr. Borchert here and here. He is extremely talented and knowledgable in the field of ONH and really opened our eyes (no pun intended) to what ONH was all about. He is currently conducting an on-going study to try to find the cause(s) of ONH. It’s still a mystery, but surprisingly the number 1 cause of blindness in children (someone please correct me if I’m wrong on that…statistics may have changed). Every few months (quarterly? semi-annually?) he releases his findings on different things pertaining to ONH. This is his latest release. It pertains to the transplantation of stem cells being done in China.
“We are aware of the Stem Cells China program; however, we have not yet reached the state of knowledge with which stem cell treatment for ONH in humans can be done in the US or Europe. Research with stem cells for this and other optic nerve conditions is being done on laboratory animals. Stem cells research is the most promising form of therapy for ONH in the future; unfortunately, it is far from ready for use in humans. We have not yet even achieved success in treating mice with stem cells. There are considerable risks to this treatment as it is purportedly being administered in China, and the benefits are presently unknown. In the US and Europe, experimental research exposing children to potential serious risks and no known benefits, is considered unethical. The testimony of previous recipients that stem cell therapy resulted in improved vision bears little scientific merit as many children with ONH enjoy late, spontaneous improvement in vision. Based on this information, we are unable to recommend the Stem Cells China program as a safe and effective treatment of ONH”
I am here to give you my thoughts on the subject. And while I have a very defined opinion of it, I do not intend to offend anyone who may be thinking of going to China, or has already taken their child to China. I am coming from a mother with a child who has SOD/ONH among other disabilities. My child is very blessed to have unilateral ONH, meaning only one eye is affected. She is legally blind in her right eye, while her left eye is near perfect. I say that because I fully acknowledge that my opinion could be different if she had bilateral ONH that left her completely blind.
My good friend, Marshelle, and I talk about this often. And we share the same philosophy. Emma has so many other issues that I would love for her to be cured of. Her seizure disorder is nasty. And she even has very mild and minimal seizures. They are seizures, nonetheless, and they are scary. Her imbalance of hormones is tricky, especially when she’s sick. I’d love for her to be rid of that. But even that’s not that bad. I think mostly, I’d love for her to not have any behavioral issues (ADHD, mood disorder, whatever you want to label it). I don’t think I could take my child to China, where their medical standards are not the same as ours, for a procedure that may or may not work. Nothing is guaranteed. I have read that many children do experience improvement in their vision, but I have not heard of any cases where the vision is completely restored. To boot, this trip is also very costly. If I remember correctly, the total is around $25,000 just for the treatment. In my opinion, that’s a lot of money to spend on a therapy that may or may not work. In China.
Again, this is strictly my opinion. I don’t have any more knowledge of it than the average ONH-experienced person. I am most definitely open to starting a healthy and respectful discussion on the topic of stem cell transplants done in China. And I’m happy to answer any questions that anyone may have! What I do know is that we all want the best for our children. There’s not one parent who goes to China for this treatment that doesn’t want the best for their child. And this is where we agree to disagree!
My son Skyler has bilateral ONH/SOD. He’s not completely blind however, he started off blind in both eyes, but his vision has improved on its own to the point where he is seeing around 20/60. He does however have strabismus and nystagmus (he goes for strabismys surgery in 9 days eek). I heard about the stem cell thing very early on in the game and I also saw a piece written by a Canadian doctor who is working closely with stem cell research right now. He brought up a point about the possibility of something called graft vs host syndrome where the stem cells create an entirely separate immune system within your body that begins to fight your current immune system. This usually leads to death. Plus who is to say that the benefits people talk about seeing are caused by the stem cell treatment? My son’s vision improved over the last three years with vision therapy and time. How do the parents of kids who have had stem cell research know that any benefits they are seeing are actually related to the treatment? And if it’s not approved here in Canada or the US, there is probably a reason for it. I wish parents would be more willing to accept their children the way they are instead of using them as guinea pigs for something so risky. Just my two cents.
Azaera, interesting info about the graph vs host syndrome…I have never heard of that. Scary! As with your son, Emma’s eyesight has improved naturally over the past 5 years as well. It’s very minimal, but something is better than nothing! Emma does not have nystagmus, but had surgery for strabismus when she was just under 2 and it worked wonders. Best of luck on your sons surgery coming up. You will be so happy you did it! Thanks again for your comment!