Our newest adventure is beginning and I want to share what we have learned about the Stem Cell therapy and why we feel we must do this. I have been watching the progress with stem cells for a very long time. It all started when Jonathan was diagnosed with lack of myelin. At this time the Internet was new (1994) but thanks to my brother I had Internet access starting in 1992. I searched and searched for information. Finally I came across a group doing research on ways to remyelinate the brain. That group the Myelin Project was founded by Augusto Odone who has a son with ALD who was trying to find a cure for adrenoleukodystrophy. There is a great movie called Lorenzo's Oil about their son and their fight to help him.
The Myelin Project has been doing stem cell research for many years. They are a consortium of doctors from all over the world doing research and sharing their finds with the group to better facilitate progress. There website is http://www.myelin.org/ They have done some clinic trials with varying results.
It was only recently while surfing the web for new information to help Jonathan that I discovered that several places were doing Stem Cell therapy now! Wow I thought. So I researched several of the places. (The Institute for Cellular Medicine, Stem Cell Biotherapy, Medra inc.)
We decide on the Institute for Cellular Medicine For Several Reasons. First they don't use Embryonic or fetal stem cells. They only use cord and placenta cells. They seemed to have the most information on their website not just about them but also with information from outside sources. They were able to explain everything to use very well. They have addressed compatibility issues. They have treated a few children with Autism and many adults with neurological issues.
Since we have tried everyting else that is out there we feel like this is our final frontier for Jonathan. There is nothing else new at this point that we haven't already done. So we feel this is our only choice to help Jonathan.
I will be adding website links to my site as I have time. I will also be adding some video links. And eventually some video of Jonathan now and as we get the treatment and any results
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3 comments:
We,re taking our 9 yr old autistic son next week to the Institute of Cellular Medicine. We'd love to talk to you about your experiences. Please email at your earliest convenience. Thank you, Gregg & Julia Kunkowski
Would love to email you but I need your email address.
Thanks for getting back to me. My email is jibek@aol.com. I'd like to hear about the anaesthesia used. I don't know if my son will tolerate a catheter. Best, Julia
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