One year.

Today marks one year since we received Levi’s diagnoses of Duchenne Muscular Dystrophy.  I can’t say that it’s gotten easier to accept but I think we are learning how to live with it.  Of course we still have trying times and we don’t know what the future holds but I’m learning to accept the unknown.  For me, it’s hard because I need to know the outcome.  I need to know the plan and with Duchenne there is no plan.  

When he was first diagnosed, I literally felt my heart break.  I can’t describe the pain in any other way.  “Not my baby” I kept saying over and over to myself.  I couldn’t bare it. I wanted to take it away.  I prayed for God to give it to me instead, but that mysterious God of ours must have not heard me.  

When Levi was born, my life was complete.  I had a beautiful baby girl and now my beautiful baby boy to complete our family unit.  I mean, how cute are these two?

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When I was told that Levi may not be around for more than his late teens or early twenties I flew into Momma Bear Mode.  Those words did not compute with me.  Their treatment plan was a joke, to me.  NO CURE? What does that even mean?  It means I was doing a ton of research day and night.  I feel like all that digging and research and the late nights crying at the computer screen paid off.  I found the answer to my prayers, for the time being, in the VECTTOR.  With no harsh side effects and video proof that it was working for other patients, I couldn’t pass up the opportunity to try this treatment.  A year later, here we are still seeing results and improvements.  No, it’s not a cure, but it has given Levi energy, restful sleep, a bigger appetite, and so much more.  This is our treatment until a cure is found. 

I can say that my superhero is my son.  I think of all that he goes through on a daily basis and how much he still shines. He still smiles, he is still thoughtful of others, and he is always giving hugs and saying “I love you” as many times a day as he can.  When I think of the future it does scare me but I know that Levi has touched and will continue to touch the lives of everyone around him.  

Levi never throws a pity party for himself and he’s always telling us how he’s going to be the next Spider Man.  As a mother, I want to see that.  The only way to see that is if we find a cure for Duchenne.  We have to invest in the companies that are using CUTTING EDGE SCIENCE.  Exon Skipping and Stem Cell Therapy are getting close.  We have to stay on the front line for our children.  If we don’t, we may let a cure slip away before we knew it existed.  

Take your sadness and your anger and let’s channel it into something positive!  Let’s be the thorn in the side of BigPharma and the FDA.  Put the pressure on them to get the ball rolling on some of this amazing science.  If they can approve pills that cause problems they can approve pills that help.  I can’t stand to see another boy lose his life while we wait for these muti-million dollar corporations to fund the science and the right trials.  

I would say that an army of moms would be pretty scary.  Let’s show them that we won’t sit idly by and wait for them to pull their thumbs out of their butts.  The time for a cure is NOW. I won’t stop fighting until Duchenne is GONE and I will say good riddance to it with a HUGE smile on my face….

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so that I can see THIS SMILE for the rest of my life.  

 

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Vitamins and Nutrition VS BigPharma

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Here’s a topic that probably won’t sit well with most.  Let’s talk about a natural approach to Duchenne.  For now, we don’t have a cure. The only treatment is steroids (officially) and that causes more permanent damage for a little more walking time in our children’s lives.  The treatment my son uses was not suggested by the neurologist, in fact, she tried to deter us from it.  My stance is that if she doesn’t know much about it, how can she discredit it so quickly?  Levi even improved on his Northstar test by two points and she still would not admit that it is working to his benefit.  Why? Let me tell you.

Pharmaceutical companies are not pushing natural treatments.  They aren’t going to because that would not make them any money. They aren’t in the business of curing people, they are in the business of creating customers.  I’ve worked in the medical field for 10 years and I’ve seen pharma reps wine and dine doctors to push their pills.  If you don’t believe me, that’s fine.  I’m not forcing anyone to take a natural approach.  I’m only here to educate the parents that want to learn about how we are treating Duchenne.

Todd Harrison from Defying Muscular Dystrophy is a 24 year old man with Becker’s MD.  He has some great information on his page as far as the vitamin regimen he is using and his approach at clean eating.  He has already seen results in his energy level and more.

My question to all the doctors and organizations that are pushing for a cure is why aren’t they letting us know about ALL the options?  Why did I have to search the internet just to try a natural approach?  Why does my son’s neurologist all but roll her eyes when I say my son won’t be taking steroids? Because she doesn’t make any money off the Vecttor. She doesn’t make any money off me buying vitamins and supplements.

I may sound like a conspiracy theorist ( if you know me that’s not too far of a stretch) but I have found that questioning everything is not necessarily a bad thing.  I think the problem is that everyone follows their doctor blindly without questioning their motivation for prescribing certain drugs.  Some doctors are great, don’t get me wrong.  I’ve worked for some fantastically brilliant and caring doctors but the ones caring for my son are mostly cold, non caring, and try to discredit any natural approach I take.

It’s not like I’m saying “Oh well!” and doing nothing.  If a disease is causing my child to be deficient in something it would only make sense to naturally try to restore that deficiency. I didn’t go to medical school but that doesn’t mean I’m an idiot.  I can see changes in my son that no doctor can tell me I’m making up.  I’ve recorded video before and after and when my son can do things he wasn’t able to do a year ago, I count that as a miracle and that I’m doing something right.

You have a right as a patient to be exposed to any and all treatments available.  I understand that some people will try to sell you snake oil and false hope.  Don’t be taken by fools that have no proof to show you.  Be smart about your decisions and research fully any and all treatments you may discover.  My turning point is always to talk to other patients that are trying it.  Don’t be afraid to ask.

We all eat horrible diets and don’t get enough vitamins. That statement is for sure true.  Don’t shop at the WalMart.  Shop at a Farmer’s Market in your area.  Buy fresh veggies and fruit and meat that isn’t pumped full of antibiotics.  If your only taking in man made and processed food then you are only hurting yourself.  We can defeat a lot of things just by eating smart.  GMO’s and processed foods are not meant to be part of our diets.  It only make sense to remove them completely and start being smart about what we put into our bodies.  If it didn’t grow in the ground or that animal wasn’t raised on a private farm, Don’t eat it.

 

Baby steps to a cure

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It has been a whirlwind the past few months for our family.  We got to go to Disneyland for Levi’s Make-A-Wish trip.  He has always loved the movie Cars so his ultimate wish was to see Cars Land in person.  He was over the moon to see all the characters in real life. We all had a blast and made memories that  we will never forget.

I feel like using the VECTTOR is giving us more time to enjoy these life moments, and that is the most precious gift…TIME.

After we got back from Disneyland I had noticed a small decline in Levi’s energy levels and noticed he was falling a lot more.  I contacted Dr. Rhodes and he changed Levi’s path in the system.  Immediately, we noticed a difference.  Levi has only had one fall in the last two weeks after changing the protocols and path.  This compared to 3-6 falls a day is a miracle in my book. It may be a small one to some but to us it’s a huge step in the fight against DMD.

I see other parents who are using the VECTTOR talk about improvements like this every day. I love hearing such good news.

The topic I want to address today is that the VECTTOR must be done just like it is prescribed.  To see results it has to be done twice a day.  The treatments last 80 minutes in the morning and 80 minutes at night.  That may seem like a lot of time but think of the benefits!  Here is a scenario just to give you some insight into why I do the treatment religiously.

5:30 am:  Me – “I’m so tired! I don’t want to get up this early to run the treatment.  I’ll just skip the morning treatment.”

4:00pm:  Levi – “Mom, I’m so tired! I fell two times at school.”

If you look at it this way, you have chosen yourself over your child that day.  That may hit hard but that’s what the truth does.  If you are that tired in the morning, think of how tired your child with DMD is.  If I never got to sleep again for more than two hours a night it would be worth it to know that my son is not tired.  Isn’t that what parenting is?

Like any other medicine or treatment, if it’s not done properly, it won’t work properly.

If you are thinking of getting the VECTTOR for your child you have to use it every day.  If you are not willing to invest that time and patience into administering the treatment then you might as well not invest in it at all. You can’t use it once a week and then tell people it doesn’t work.  If you do use it every day I PROMISE you will see results.  It’s that simple.

In my next post I’ll be talking about the benefits of adding a vitamin regimen with the use of VECTTOR.  I am in no way a physician, I just like to share what my son benefits from and what other people in the DMD community are benefiting from.

Thank you for reading and please help spread the word about this wonderful treatment.