Remember in a small gesture great strength. ;)

My name is Edyta Jaszczura and I created this page in hope of helping my friend in Poland. 29-years-old Joanna was diagnosed with SMA 1 - spinal muscular atrophy.

Here is her story

Joanna suffers from spinal muscular atrophy. Her body does not produce a substance responsible for the protection of neurons, as a result of which neurons die. The result is progressive muscular atrophy. The patient stops eating and breathing on their own , and his vital functions are supported by the respirator.

Joanna was born on February 17, 1990. She grew up well into the seventh month of life and there was no indication that she was ill. Around the eighth month, she began losing strength and her motor development stopped.

Joanna was getting rehabilitation since she was 10 months old, however it did not bring any results.he worst came in her 20 years - she stopped breathing alone and her breathing replaced the respirator.. This terrible disease wants to take her life away. The only salvation for her is to go abroad as soon as possible and start treatment with a magic drug called Spinraza (Nusinersen).

This medicine is the only hope for Joanna, because it can stop the development of the disease because only he can stop the development of the disease. This medicine belongs to the five most expensive drugs in the world, and the annual cost of treatment is about 540 thousand. euro. Unfortunately, this is an amount that exceeds her financial capabilities .

I think it is also significant that Joanna is an active person on the labor market. She has been working remotely for over six years. She is very intensely trying to secure her own future. She's really trying hard. Unfortunately, the funds she has from her income are enough to pay for a year-long rehabilitation in the dimension ONLY four hours a week.

Joanna is fully aware that her parents will not be able to be with her forever. She knows very well that one day she will have to live independently relying solely on herself, her own strength and acquired fitness.

However, please ONLY for support on necessary medical equipment (respirator, pulse oximeter, coflator) and orthopedic equipment. We will be grateful even for minimal support.

Joanna is a beautiful but hardworking woman also. So, let's help, let's light this tiny flame of hope and reduce my friend's fear of the future.

Remember in a small gesture great strength. ;)