September 2011 :
A day with Fabienne Larouche to visit the recording studios of "30 vies"


2011 :
Part of the profits will be given to the foundation. Come get ready for fall with our advices and to drink a good glass of wine. Price and sample will be given away.


At the age of 18 months, rocked my world ... but let me tell you my story.

I came to the world on a beautiful winter day. February 12, 2008. My birth was not an easy one: in fact, I introduced myself in the face and my heart slowed down during contractions. The doctors had to perform a caesarean section. But I was perfectly healthy! A beautiful little girl of nearly 7 pounds. I was a baby easier.

At 2 months, I slept a 7 hours online! My parents were anxious to see me sleep so long ... My mother took me everywhere with her ​​because I was sleeping or gazed around me with my big eyes curious.

At the age of 8 months, I started to walk with 4 legs and a week later, I stood already standing on support.

And 9 months, I walked. Curious as I was, I was walking around proudly on my two legs.

I was developing normally, even faster than the norm. After starting to jog on my legs just went very quickly down and up the stairs, run, dance, climb!


At one year, I proudly slid the park and all alone! Because I am independent myself! No way to help me. I started talking, singing. Almost always happy and so friendly! A little ray of sunshine. Anyway, I had my little character so there! It takes ... right?

Unfortunately, at the age of 18 months, the clouds have taken the place of the sun. Suddenly I was falling more often. Yes! I lost my balance ...! The steps became a feat for me now. And social skills ... I did not want to see anyone and especially not the other look at me! I wanted Mom or Dad. And toys, they do not interest me at all. No. I was intense fits of rage! Almost 24 hours 24. I cried all the time, screaming, I did not know what I wanted! Food, boff ... I had no desire either. In addition, I was not able to sleep. I woke up almost every 15 minutes. The only words I said now was: doudou, milk, sucking, mom, dad.

In the world that was mine at that time were the only things that interested me ... and again! Oh yes! I began to bleed from the nose often enough to throw up and my eyes began to move in a jerky way. My head also has to shake. So my parents took me to the Hospital Sainte-Justine. But there, they did not really take my parents seriously. After a battery of tests, they concluded that I suffered from anxiety disorder following the separation of my parents and shared parenting.

Humm ... Easy. Me, anxiety disorder? I was so happy there are only a few times! Back at home, my parents were questioned. Parenting especially! How many questions! They did not understand more! During this time I kept my seizures and everything else.

And then I started to fall and very quickly. Suddenly, there is no just shook my head. No, my upper body too! I was even able to eat my yogurt alone! Obviously, I was very frustrated.

Enough is enough! Direction Montreal Children's Hospital. Just before leaving, I could not even stand alone on my legs. Finally, we were taken seriously. There, I still degraded. Longer able to stand alone basis, motor disorder ... I had a hard time stacking the blocks, I, who did everything so well before! Within a few days, after several observations, a diagnosis is made: Opsoclonus-myoclonus.

But what does it eat it in winter? My parents are devastated. They know it's serious. It is an autoimmune disease. My own system turns against me, he attacks me. Fortunately we came across a neurologist who had seen this case. But do you know how many cases he had seen? I was the third in 20 years!

At almost 2 years and I do not work anymore, I just drags the ground. I started to speak but my pronunciation is much more difficult. My parents often have trouble understanding me. Hard to believe a little girl who sang and danced to a year and a half!

I have had 3 treatments to help me control my disease: cortisone, immunoglobulin (IVIG) and plasmapheresis. After four treatments of IVIG, I began to bounce back but the doctors decided to try plasmapheresis. Unfortunately, the second treatment canceled the good effects of IVIG. So after five months, we return to the starting point.

But when I say that is not quite true because my parents fought for the last 5 months so that our doctors here are aware of a site for a specialist about my illness in the United States. His name is Dr. Pranzatelli and has treated about 125 children with my illness. And there are about 200 children like me in all the earth! We were lucky to come across a medical student who has bothered to contact Dr. Pranzatelli. So much has been said, but many hope that I find health soon!

From 2 to 3 years following the intervention of our doctor who took his information on the protocol proposed by the specialist of the disease in the United States I received more treatment for more than six months. I received a treatment of ACTH (a hormone) by intramuscular injection in the thigh was every 2 days because of a high dose at the start by reducing the son of the time, combined with another treatment of IVIG (anti body donor) for 2 days in a day clinic every three weeks after a while it became in the months and shortly after, the month and a half and more than a combined 3 rd ritaxumab the treatments. Beneficial in my system for 6 months to remove some cells are too many in my system and damaging to me.

Currently have is made at the end of six months a little more so after all this is what we found was two weeks of my 3 years! My doctor has decided not to do treatment at the moment to see how the disease behaves in s'avoir if the symptoms are not coming back soon ... I have to have surgery for the eyes as well because I ' have developed strabismus (eye notes). After this if things go well we will stop the medication or we will have again another time processing ritaxumab

The name of my disease is Opsoclonus-myoclonus and my name is Joanie!