Message from from Adelina's mom:
I am the mother of Adelina Boltag (1 year and 5 months old). My child was diagnosed with a terrible disease – SMA - spinal muscular amyotrophy of the 1st type. It is a rare genetic disease, which leads to weakness of the body muscles, as well as respiratory and swallowing muscles followed by their atrophy. One in every 6,000-10,000 of newborns is diagnosed with this disease. And my daughter, Adelina, to my great sorrow, is one of them.
Unfortunately, in Russia there is neither medical treatment nor any medicine to cure the disease. That is why children suffering form it in Russia are doomed to die. But there is the medicine for it in the European Union countries, particularly in Italy. The name of the medicine is SPINRAZA. There is a comprehensive programme of free treatment of children in European countries. Spinraza helps not only to preserve the motor skills, but also to recover the lost skills!!! For example, it may help to recover the ability to swallow food, which means that the child will be able to feel the taste of food again and to eat independently!
That is why this medicine, Spiranza, is vitally important for Adelina, but its cost is simply stratospheric – 45 million roubles (750,000 $)! In the USA and in EU countries the treatment is free, but only for the citizens of these countries. This medicine will appear In Russia in 2 years from now, but we have no such great amount of money and we have no time to wait for so long… There might be no tomorrow for us… Now we are actively looking for a possibility to get the citizenship of the countries where there is Spinraza. Meanwhile we must survive at any cost! THE MOST IMPORTANT THING IS NOT TO BE LATE!!! Not to be late in getting the cherished medicine, Spiranza, so that Adelinochka could live on!! Adelina is a long-awaited child! I waited for her birth for 7 years! And she is my onli child !
FOR GOD’S SAKE, FROM ALL MY MOTHERLY HEART, I BEG YOU TO HELP US TO GET INTO ITALIAN HOSPITALS AND TO SAVE THE LIFE OF LITTLE ADELINA!
Hope for your help!
Yours faithfully,
Albina Boltag
boltag-ah@mail.ru
+79271679055