Kelvinsmom - Michelle
  • Female
  • Johnstown, Ohio
  • United States
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Kelvinsmom - Michelle's Discussions

Research needs your help

Started this discussion. Last reply by Anita Bullers May 23, 2010. 2 Replies


Started this discussion. Last reply by Kelvinsmom - Michelle Feb 27, 2010. 5 Replies


Welcome to Kelvin's Page!

Profile Information

About me:
I am the mother of Kelvin Jones born Sept. 2002, he is currently 7, he has a Deletion of 45-52, out of frame, although due to the Kelvin's strength, etc. at this time, they aren't sure if he is DMD or BMD, but of course, only 10% chance to be BMD with being out of frame. We will not get a muscle biopsy, unless highly recommended. I would like to hear from others with the same deletions. There is an entire family in Spain with the same deletions as Kelvin who have remained fine, there entire lives. In other words, they never quit walking and lived normal life spans. There are others in the US with his deletion who have been determined to be Becker as well. We found out about his MD, January 2008. I am 40. I also have a daughter, age 9, Malia. Henry is my husband, I also have 3 dogs, 1 parakeet, fish and hermit crabs. I am determined to help our boys until help is found, and I have faith that it will be! Kelvin is on Protandim - 1 pill (ground up and mixed with the extra green tea extract that I open up a capsule and use 1/2 capsule, then I put a little applesauce on a spoon, make a groove in it, then put 1/2 the mixture, the cover it slightly, then I do the same for the other 1/2 of the mixture) Kelvin has no trouble with this; Arginine 1500 mg, Glutamine 5 g, Creatine 2.5 g, Miralax (amount depending on how his bowel movements are, haven't given much lately) (I mix the Arginine, Glutamine,Creatine and Miralax with 8 ounces of flavored drink - they are all non flavored powder), Liquid Multi Vitamin, Lifetime Liquid Calcium Citrate/Magnesium/Vit. D 2 teaspoons per day (it is strawberry flavored and a very good product) and he takes a Adora chocolate Calcium/Vitamin D in the morning, CoQ10 100 mg - I use Qunol (check it out, it is great and good flavored), Barleans Omega 3-6-9 DHA 320/EPA250 Liquid Fruit Flavor, Noni Juice 1/2 oz, (mixed with about 4-6 ounces of Rootbeer), Deflazacort 15mg (this is a half of a pill, I divide the pill in 1/2 and put the 2 pieces - 1 at a time, in Gogurt or Applesauce, I just put the Gogurt on a teaspoon and then put the 1/4 of the the pill in it. Kelvin takes 2,000 mg of Vitamin D every day along with 1,000 mg drop of vitamin D.We massage both Kelvin's calves and wrists daily then stretch them. He wears night braces as a preventative measure. We watch how much sodium he eats and he eats tons of fresh fruit and veggies. Kelvin has been a fantastic eater of healthy food since birth, rather have grapes and other fruit, avacado, etc. instead of any cookie or sweet. He improved greatly, I mean greatly, after adding Protandim and Noni Juice right after diagnosis. I am certain that the Protandim increased his intelligence ?? (I don't know what it did, but like a switch, he changed and was doing things we thought impossible). For years he couldn't breathe good at night, always snored and slept with his mouth opened. He doesn't do this at all, not even when he has a cold (he hasn't had a fever in nearly 2 years). The breathing great is due to the Noni Juice (the doctor said it probably helped as well). Stretching has helped a lot. He swims when possible and we are getting a hot tub going for winter use. Kelvin continues to improve and has been improving over the last 4 years, we believe through supplements, stretching, massage, night braces, swimming, steroids and most importantly, through our faith in God. We pray nightly for all the children of the world with DMD.
About my family:
My husband is Henry, also 39. He is from Belize, Central America, so we visit there at least once per year, where I have about 35 nieces and nephews.
Name(s) of child(ren)/individual(s) with Duchenne:
Kelvin Jones
Age(s) of child(ren)/individual(s) with Duchenne:
Johnstown, Ohio

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Kelvinsmom - Michelle's Blog

WHEN I GROW UP..............

Posted on June 9, 2009 at 9:08pm 10 Comments

I titled this post after a very negative employee's words at work. An employee of mine just found out we are doing a Make A Wish trip next week. Well, I thought I had told her. She was quite nuts about the entire thing, starting off by saying that she thought it was for very, very sick kids. I was ticked off at that point. I told her, well, it is for kids with many situations, of which DMD is still a fatal illness and technically, they like to work with kids who aren't in constant nursing or… Continue

An amazing video of faith, true love, and strength - it gave me strength - I needed it

Posted on June 17, 2008 at 7:31pm 1 Comment

I wanted to share this video. Read all the intro and then watch the video if you would like it. It is on I am not sure what the child has as far as his disability, but strength, love and faith is what he and his father have. Of course, it made me cry, and I can't imagine you won't. It is an amazing video and is extremely powerful!!! You may need to copy and paste the link of the video. Michelle

The son asked his father, 'Dad, will you take part in a marathon… Continue

MDA Camp Visit today

Posted on June 11, 2008 at 10:07pm 1 Comment

Even though Kelvin is only 5, he'll be 6 in Sept., he and his sister and grandma and grandpa got to spend the day at the MDA camp. My brother is a respiratory therapist and volunteered there for 3 days, so they got to go to family day. My parents couldn't believe what an amazing job they did. Kelvin can't wait to go and stay next year. Of course, I'm not ready for that (for him to stay somewhere without me), but he had so much fun, he wants to live there. Of course, I remain positive, that… Continue

Pool and Hot tub

Posted on June 8, 2008 at 6:13pm 4 Comments

This week we put in a 15 foot pool (we'll go bigger later, but this will help Kelvin for now). We then bought a hot tub and tub enclosure today, so that we can all be in the hot tub any time of the year, even when it is super cold. Of course, we bought this to help Kelvin, on advice of Dr. Wong, she says the pool and hot tub are great, so that is what we did. I can't wait to be in the hot tub, but we won't get it going until fall. We are just doing what we can to help him, whatever it takes.

Comment Wall (39 comments)

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At 2:19am on August 15, 2010, Leslie Guzman said…

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

At 7:58pm on December 5, 2009, Tonya said…
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!

At 2:19pm on November 14, 2009, curtis renard said…
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 – 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.
At 11:55am on August 25, 2009, Leslie Guzman said…
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: Have a safe trip.
At 9:13pm on August 11, 2009, Ofelia Marin said…
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.
At 9:46pm on August 7, 2009, Regina said…
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.
At 2:30pm on April 9, 2009, djamel fathi said…
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.
At 6:37pm on April 7, 2009, Jennifer Chalfan said…
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.
At 4:57pm on April 6, 2009, Leslie Guzman said…
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!

At 8:34am on March 26, 2009, Ana Vaish said…
Thanks Michelle.

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