Urgent! Help Ayala get Zolgensma infusion

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Dear all,

This is a fund-raising company for my daughter, Ayala Kumarbekova. She needs the most expensive medicine - ZOLGENSMA infusion which costs $2.2 million. The government doesn't support us yet, so we run the fundraising companies.

We are running a fund-raising company in Kazakhstan (in local currency) and as of now collected around $50,000. We hope that our international friends and caring people all over the world will help us collect the needed amount of money faster, as the time is not our friend now for my babygirl.

Ayala was born on 30th October 2020 as a healthy baby (9/10 Apgar scale). But after the 2nd month her physical development slowed down. By her 5th month of life she was diagnosed with a disease unbelievable for us - type 1 spinal muscular atrophy.

Spinal muscular atrophy type 1 is a rare disease caused by a genetic defect in the SMN1 gene. It encodes a protein that is essential for the survival of large nerve cells that maintain muscle tone. Due to a decrease in the level of this protein, the function of neurons decreases and atrophy occurs, that is, a weakening, a decrease in muscle size. It appears suddenly in the first six months of life and progresses rapidly. The danger of this disease is not so much the weakness of the muscles and limbs, but rather the atrophy of the respiratory muscles. Children with this type of disease, in the absence of correct treatment, do not live up to 2 years.

Only one injection called ZOLGENSMA can save our baby's life, with an unbearable cost for us - $ 2.2 million / 948 million Kazakhstani tenge. This is the most expensive medicine in the world. After its introduction, the course of the disease will stop completely. We have very little time…

I understand that it is difficult to raise funds for the most expensive medicine in the world, but still there are dozens of children who were helped by such fundraising from caring people.

I ask for your help to collect this amount, and save the life of an innocent angel!

Our baby has a chance for life, and you can give this chance! Even small contribution, can save a child's life!

With hopes for her good health,

Ayala's mother, Alma Kumarbekova