Help Ksenia to survive – Spinal Muscular Atrophy 1

Update posted by Maria Plekhanova On Jan 24, 2017

Our Ksenia is about 5 months now and she is doing fine over all as for child with Spinal Muscular Atrophy, her parents are doing all possible to keep her life parameters controlled:

3 times a day we are doing for her breathing gymnastics with "Ambu" device. SMA is the disease with which the breathing is insufficient and the muscles are not able to develop fully the breathing system, this is why this training helps to avoid deformation of lungs. Usually at about 4th month the child with SMA has problems with lungs deformation.

We had first new which made us happy, it is that Ksenia was seen by doctor from SMA charity foundation, and he stated and informed us that her lungs are not yet deformed!!!

Another procedure is made 3 times a day with cough assist, it needs as a part of survival. It needs to avoid blennothorax and it is essential to blow out the lungs with air to prevent lung pulmonology troubles.

What we are afraid most of all is the aspiration. Because it may lead to instaneous death. Her muscles are getting more and more weak with disease progressing and swallowing reflect is fading. Every minute we must be aware. We will not have second chance to safe her life..

This is why we need to buy portable aspirator, the device which must be with Ksenia all the time!!! We need your support and care. We have much to do for Ksenia in the future, and we don't have time to lose time.

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