Today is Rare Disease Day

Today is Rare Disease Day! I have too rare disease - Spinal Muscular Atrophy and I member about all my friend with this disease, I member about my friends who passed away from this hard disease and I go on my fight with SMA.

If you want helping me you can to buy my art fashion print in my online shop https://www.zazzle.com/clubnika27/products

My Rare Disease Day

If you do not like something in your life, just turn the page of your life and start writing again ...

I did so a few years ago. I was destined to be born rare, because I have rare genetic disease Spinal Muscular Atrophy. This is a very rare serious and dangerous disease of muscles and spinal cord, every 10,000 people are born with this disease. And it is incurable yet in any country in the world. In my life there were a lot of hard moments, but there was also a lot of good. But despite this, I've been waiting for a miracle all my life, because I believed that it was possible.

One day in 2013, I read article that the Gene Therapy drug was invented in the USA as a hope for future treatment of SMA. From that moment have passed 5 years and in my life much has changed. I regularly followed of the news of medecine, in which says that in the coming years gene therapy may be available in many countries. And I'm very happy about that. Because during these many years of waiting, new discoveries in medecine are constantly being created and new drugs and ways of treating SMA are being created.

In my life too have been changes. Now every year I go to the Italian clinic Nigrisoli in Bologna for treatment, and I get treatment there from the best specialist of SMA, Dr. Villanova. And I think that this is already a miracle for me.

Text from: https://www.facebook.com/groups/smacuremonika/

Rare Disease Day

28 February will be Rare Disease Day!

Many people in all the world has Rare Disease and them need your help.
My disease - Spinal Muscular Atrophy is Rare Disease.

Do not forget about this Day.

Today international rare disease day

Hi, everyone!

Today international rare disease day.

I want say any words about me and my story. From 1.5 year old doctors says about my disease, about that I never will walk. But I not give up, because I always believed in miracle. All my life it's very strong fight, fight with SMA. It's fight go on every days. In my live I have meeting with different unique doctors.

Now I have many purposes, I want will doing surgery scoliosis, its very need for me. And also I dream that one day I go to on clinical trial gene therapy for patients with SMA. For me it is very important. But now I ask you don't remember about rare patient, we need your help.

I very need respiratory treatment in Bologna. I will be happy, if you send me your donation.

My charity account:
PayPal: Lemeshonok@gmail.com
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