Welcome to Kelvin's Page!

Michelle,

You can stay with us. No problem. Please contact me by email since I don't come here very often. Here is my email: guzman.l@pg.com. But again, I confirm our availability and we would love to have you in our house.

Leslie

Thanks for your kind words Michelle - we would LOVE to know all you're doing to keep your son healthy. We are very open to supplements and natural alternatives.

How about I shoot you an email after the holidays and you can give us some ideas? Thanks so much!

Tonya

Michelle,
I am responding to your comments regarding Ryan's treatments in Costa Rica. I am Ryan's Stepfather and would like to turn your skepticism into optimism. 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 treatment, 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 over the years, 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 in Costa Rica – Institute of Cellular Medicine ICM www.cellmedicine.com – has been treating various diseases, since it opened in 2006 and a new clinic recently opened in Panama. 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 happened about a month ago in the Cellular Immunology medical journal.

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, in order 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. First, we are 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. Pat is just one of hundreds of requests from around the world that Neil is responding to.

Keep the faith; hope is rapidly fading into the reality of success for those with DMD.
Curt

Michelle, you can stay with me. No problem. Call me: (513) 7659416. I think you already have my address. Better to contact me through my diirect email since I am having problems with internet: guzman.l@pg.com. Have a safe trip.

Michelle, Thanks for your answer about Kelvin. I was just trying to compare him with Robert. At 22 mths he cannot run well, it is more like a very fast walk. He also uses hands when standing up from the floor and cannot jump at this point.

Hi Michelle. Our sons are about the same age and were diagnosed about the same time. My Jordan was diagnosed in June 08 with a deletion of 8-11. I have also been told by Dr.s at CHOP that this deletion sometimes follows a more "mild" progression. I just continue to pray. My son seems to be doing well, even though I don't really have anything to compare it to. I was also praying that he might be called a becker's, although his CPK (when tested for the first time in April 09) was 20,300. This sort of dashed my hopes. We don't go to Cinn. until Feb. In the meantime, I am trying to start him on Juven, but am waiting for grape flavor to arrive, as he didn't like orange. Of course the rest of us tasted it and thought it was great. I am hoping that once he has been on the Juven for 3 mths or so I can introdce protandim.
In any case, would you mind sharing what Dr. Wong about cpk and muscle biopsy. I am not putting my son through it unless she recommends it. Also, would you mind telling me how Kelvin came to be diagnosed? Jordan uses a modified gowers, but I put him in PT for bouncing on his toes in Feb 08, and it was the PT who recognized the other weakness.
Sorry for the long post, but thanks for any info you are willing to share.
Regina

Hello Michelle We been in cinc last week everything was great,Dr Wong and her group were more than perfect We been answered about many questions.
Me and my family loved the area,since it's our first time,I been thinking to establish in a rural area close to cinc.I want a favor,can you please give me your e-mail for more details,I appreciate your help.Thank you.

Hi Michelle! My son is nine and this will be his first year going to camp so there is always next year. I am a little nervous about it but i feel like it's time for Cody to meet some kids his age that are dealing with the same thing.

Hi Michelle,
Thanks for writting. I am running... so little time to do so many things... ! but need the work!... I would love to see you in August. ! Just let me know when ever you have your plans ready. Are you going to the PPMD Conference?

I am sorry to hear about the risk on your husband's work... I am feeling at risk as well but we need to do everything we can to hang in there.

I know it can be frustrating when you offer the best and people don't react possibility but you are doing the right thing and we all need to accept the differences in personal thoughts and believes... but it is a great thing what you do about offering information!.

We pray always as well for Kelvin and the little boys we know... we need those prays so much!! Keep your heart up!

Leslie