Our little princess was born on March 14, 2017, a girl with white skin and very beautiful eyes. Nora shone like a light in to our life and gave us an indescribable happiness.

As the days went by, she grew bigger and sweeter. We had a lot of blissful moments watching her progress. Nora could easily spin by the age of 3 and a half months old and she could sit without any support when she was 6 months old.

There was not any problem until she turned 11 months old. While standing or walking, I noticed her knees bending. Nora’s motor skills became weaker and weaker day by day. The doctor believed there is no concern but she could not still walk when she was 14 months old. That was the time we visited the doctor again and after genetic test , it was determined that Nora has SMA(spinal muscular atrophy) disease.

I will never forget that day of May 24, 2018, we got the test results, the worst day of our life. The doctor said there is a medicine called Spinraza for it, we were so relieved to know that but soon we figured it is one of the most expensive medicines in the world and not even available in our country, Iran.

We were really upset because we could not do anything for our precious daughter. Later we found out there are other drugs being tested, but they were also non-affordable. We decided to start a campaign with the hope to save Nora, because there was no other possible way.

Please help us so we can save our little angel. Nora is a very happy and hopeful child with many childish aspirations and for her treatment she needs your support.

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