Melissa, I don't think I received your email. Please send to firstname.lastname@example.org . All is well here and Ryan continues to do very well. The local news station is going to do a follow-up interview about Ryan, which will include an interview with another local boy with Duchenne that has recevied the same adult stem-cell treatments in July of last year. He is two years younger than Ryan, but he is further regressed in the disease than Ryan. He is showing the same type of results that Ryan experienced - significant weight gain, more endurance, increased body mass, much better overall health. He has only had one treatment, so he has not had a biopsy.
As soon as the interview is released and posted, I will add the link to the PPMD site. Curt
I personally do not know any person who has taken the stem cell treatments. However I have had detailed discussions with folks who appear as contact points for stem cell success stories published in Indian newspapers.
I persued 3 news articles, one with Bieke, one with CyroStem cell and one more. In all the cases I was only able to exchange emails and have discussions over phone. Dr Rao at CyroStem cell has promised me a paper with findings of CK values and biopsy results some time early Dec. If I hear anything I will keep you updated.
I am responding to your comments regarding Ryan's treatments in Costa Rica. I am Ryan's Stepfather and your positive attitude is admirable. I am sorry that your son has DMD, but I can assure you that there is more than just hope on the horizon.
Ryan was selected for this research treatments, because of our personal relationship the Neil (Dr. Riordan). He has known Ryan's mom and dad since high school and has known Ryan since he was born. Ryan was diagnosed with DMD in 1989 and Neil has researched numerous treatments that might help him. When he contacted us in Jan of last year, we were very excited. His motivation for helping Ryan was as a friend and not to gain fame, as one blogger noted.
His clinic has been treating various diseases, since it opened in 2006. They primarily have worked with MS patients, but have also worked with many others. He does not utilize any immune suppression techniques and only works with adult stem cells.
We knew going in that based on all the success he has had with other diseases, that the worst thing that could happen would be that Ryan would remain at his current state. Fortunately, Ryan has excelled beyond our highest expectations. When we received the results from the biopsy in Jan, it was one of the most emotional days I have ever experienced. We waited to go public until Ryan's case study was published, which happend about a month ago.
Ryan is getting stronger and is hoping that the research gained from his study will allow others to reap the same benefits. His hope is for a 30 year old person to hear something about DMD and say I think that is what I had when I was a boy. Ryan's has been in a wheelchair for almost 12 years and his muscles are very weak, due to the lack of activity. The physical therapy he endures at least three times a week, is a slow process to reactivate the dormant muscles. The good thing is that they are getting stronger.
We are hesitant to post our comments on Pat's blog for two reasons. Were not quite ready to field the flurry of requests we know we will receive. The second is that we do not want to interrupt any conversations with Pat and Neil. This is why I responded to you personally.
Keep the faith, hope is rapidly fading into the reality of success for those with DMD.
Hi Melissa, My name is Dana Edwards we are from Toms River NJ. Our son Tanner has deletion 3-36 in-frame and he just turned 5. How old is your son? I see Dr Bonnaman at CHOP and I love him. I hate this entire situation but we are walking through it. We have 6 kids and Tanner is our youngest. If you have a chance write me back I would love to talk to you.
My son is doing well. He is still walking on his own, except for the occasional fall. He just has a hard time getting up from the floor. My son was diagnosed at age 61/2. He takes steroids and wears night splints. What hospital do you go to?