This fundraiser is organized to give hope for life to Nikita and defeat his disease spinal muscular atrophy (type 1 SMA)
Our son Nikita was born on June 16, 2019. He is now 6 months old. At the age of 1 month Nikita was diagnosed with a very severe genetic neuromuscular disease spinal muscular atrophy (type 1 SMA). This is one of the most common diseases of the rare, sick one newborn per 6000-10000....
The disease affects the motor neurons of the spinal cord and leads to increasing muscle weakness. The disease is progressive, the weakness begins with the muscles of the legs and the whole body and with the development of the disease reaches the muscles responsible for swallowing and breathing. At the same time, the intelligence of patients with SMA is absolutely preserved. On average, without treatment, these kids live 2 years.
My husband and I have the first child in the family. We could not believe it, how our healthy child from birth (received 8/9 on the APGAR scale) can be terminally ill, it was unbearable to think about it.
Every day counts!
What to do: fight for life or enjoy the last days spent with him?
We will try to do everything in our power, we will fight!
Nikita pleases us with his sincere children's smile, eats, talks in his own way, swims and walks. But every day he finds it harder to breathe. We try not to show it for him, we keep as we can, as if everything is as usual…
There is no treatment in our country. Because of the threat to the life of the baby, our family was forced to make a strong-willed decision: to leave family, friends, work and leave their country, their home. We moved to Poland, to a foreign country for us, without knowledge of the language and without friends, to begin the fight against Nikita's disease.
With 20.11.2019 year Nikita was able to take the drug Spinraza (Nusinersen)
Doses of the drug must be administered periodically throughout his life, and the reception of the drug itself is painful and invasive.
Nikita's condition is a little better, but he is still weak and can not lift his arms and legs, does not hold his head, eats through a nasogastric probe, breathes at night and a little during the day with the help of a non-invasive ventilator
We need to start full treatment now and very urgently!
There is hope! In 2019, the FDA approved a new drug called Zolgensma (https://www.zolgensma.com/) and treats SMA! The new drug repairs the chromosome with a special virus that causes zent's body to produce enough proteins to cure him. He could move, play, laugh and grow to be strong and tall! However, it must be administered before Nikita reaches the age of 2, or this treatment cannot be used!
Zolgensma is a single dose. There's only one hurdle to getting it: the cost is more than $ 2.1 million, and that price makes it the most expensive drug in the world.
This drug will give Nikita a chance to live freely: breathe and eat independently, move his arms and legs, he will be able to learn to sit without help and even possibly walk…
Nikita can not miss this chance, he needs your help for this life-saving treatment and return home. For you it will take a few seconds, for him it can mean a healthy, happy and long life!