Diagnosis of the child
SMA (spinal muscular atrophy) 2nd type
SMA (spinal muscular atrophy) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness.
The purpose of the collection
History of the child
Varya has a genetic disease SMA (spinal muscular atrophy), 2nd type. Children with this disease can’t stand and also independently breathe. Also the backbone is bent and all internals suffer.
In the Children’s Medical Center “Schneider”, Israel, to Varya were made 4 injections of the medicine SPINZARA to stop a disease. Improvements after SPINRAZA medicine were after the 3rd injection.
It is vital to make the 5th injection for extension of treatment which price – 95,000 EUR.
“We need support. We ask all people to render a financial support to our daughter Varvara. Varya is just little girl who wants to LIVE and enjoy life, happiness is sometimes in little things” — Elena, Varvara’s mother shares.
Without your help it will be almost impossible to find a chance to recovery!