"What will happen if Zolgensma is not introduced now? Timur will simply suffocate. In front of my eyes or in the ICU...
Now I know what it means to go through seven circles of hell. My hell is the CMA. The monster that takes my baby's life. And you never know when he's going to deliver the next devastating blow to my defenseless, tiny son. He is fading. There is a silent pain in his eyes. I lose him every day. During the last attack he didn't even cry or scream, he just wheezed and moaned. HE CAN'T EVEN CRY ANYMORE BECAUSE OF THE PAIN. This is a terrible disease, there is so much of it - hands, feet, head, it bound everything.
I live in constant fear that every day near him may be the last...
Our enemy is not only the disease, but also time. We have CATASTROFISHLY little time left to save Timur. Trite to the world, but saving my son is Zolgensma. There are hundreds of rallies online for this shot. Hundreds of tragedies, hundreds of hopes, hundreds of despairs. How is my Timur different from all these children? Nothing. He simply, like all children on the planet, deserves to live. I couldn't accept the verdict and wait... My motherly heart resisted! So I decided to fight! In the hope that a dying baby from the DNR will touch someone who reads this plea, I appeal to everyone - help, do not turn your back on us ... Without a shot, my son is doomed to an agonizing death ..."

News 22.03

Timur's mother Marina writes: "The good news is that we were given an order for Spinraz injections (this is a maintenance therapy to help Timur to live till the Zolgensma injection) and we finally got a new machine with which Timur can breathe better. After resuscitation my little boy is very weak... He can barely squeeze my hand with his tiny hand. I can see my little one fading away. I can feel the life draining out of him drop by drop... I am forced to watch helplessly as the AMA takes my son away from me. It's very scary... But I have no right to despair... I have chosen to fight this monster and I will not let him win!

To my son
"I had a dream that you are healthy,
That happiness is open to us.
Running toward me, and beneath your feet
A rainbow spills.
I'm so light and so well.
And the word CMA is forgotten..."

NEWS 28.04.21

The trouble of a seriously ill little boy from the DNR was reported on a federal channel - Russia 1 TV channel shot a story about Timur Lesny

Timur's mother Marina writes:

We still have not received supportive therapy. There is a huge waiting list for Spinraza. The waiting is killing me. Last week in the ICU Timur got pneumonia, and on top of that he was diagnosed with otitis. Now we have been transferred to the pulmonology department. His condition is stable and serious. But there was much more pain and suffering. Besides regular procedures to maintain breathing Timur suffers from injections and drips with antibiotics. He is still breathing with the help of NIVL. Last week we had a little celebration - little bun turned 10 months old. Another birthday in the hospital.... I am happy that my baby is growing and at the same time I am very scared, because time is our enemy and with each passing day my baby is fading away....I am afraid to even imagine that one day I might not hear my son's breaths anymore.

Also Timur really feels the support of every kind person and with a toothless smile says: "Thank you! I can't cope without your support! I really want to live!"

NEWS 07.05.21

An important event happened in Timur's life. After a long wait Timur finally received the maintenance therapy - a drug called Spinrazu. It was so hard to imagine how the boy endured this deadly pain, because in his bruised body after a pneumonia, the dose of medicine was injected directly into the bone marrow WITHOUT AN AN AN AN ANTESTHESIS. And there was no beloved mother, but only fear, heartbreaking screams and silent tears, to tell people about his continued anguish.
It is very upsetting that so many people are sure that getting the "Spinraza" is a victory! And because of this collection began to stop....
IT IS NOT! This is just a small step on the way to victory ! It's just time won ! It's the days of life we've won from the CMA!

"SPINRAZA DOESN'T CURE.

It only supports and slows down the destructive processes that this monster, the SMA, has started in the baby's body.

TIMUR'S SALVATION - ZOLGENSMA

Timur's condition is stable and serious. The boy is lying motionless, he cries more often, even in sleep, because of the unbearable pain and endless fatigue. Timur is losing skills every day, he already lost his swallowing reflex, and his breathing is getting worse every day.
The Zolgensm injection is a full LIFE for Timur! This does not mean that after the injection, the baby will immediately sit or walk. An extensive rehabilitation course awaits him, but he will be able to gradually feel and get to know the world, not only with his inquisitive eyes, but also with already moving hands and feet.

Thanks to your generosity the Foundation has already collected more than half of the money! But the price of Zolgensma shot is HUGE! Let's help Timur to make the first steps to his happy life without CMA! The baby can't do it without you!