Help SMA-kid

Little Alex was born 6 January 2015. He was normally gaining weight and loved to sleep for a long time like all babies. Closer to two months old parents began to notice that Sasha did not hold up his head, weakly moving legs and hands. Finally, the visits to the doctors began. Unfortunately, the terrible disease - Spinal amyotrophy type 1 Werdna-Hoffmann was suspected. It was a shock for his parents! There is no necessity to explain what the Alex parents felt.

Letter from little Alex mom:

"My husband and I did not believe that it could happen with our baby and were waiting for the results of DNA analysis with horror. During the examinations we and the baby were in a regional hospital, where he was down with pneumonia, so his condition deteriorated, and on 16 March he was transferred to the intensive care unit due to artificial lung ventilation apparatus. 

Then were the results from geneticists: Werdnig-Hoffmann spinal muscular atrophy syndrome, type 1, the damage to the anterior horn of the spinal cord. This is a rare genetic disease. The disease is not treatable but the babies live in spite of medicine laws. These children were called as "SMA-children". The children need care that can only give mom and the native people, because the mother is the child's part

Ssome days later, Sasha had the surgery to install a tracheostomy and gastrostomy. Now, despite everything, we decided to fight with  this disease and try to make Sasha's life mor brightly.

We want to hope for the best. All the more so the medicine forge ahead. But the supporting treatment, medications, specialized equipment for a complete care are need for baby to grow and develop and could breathe and live at home.

Unfortunately, there isn't enough money to buy the all vital means for Sasha's life. I'm begging you to help us to raise funds for specialized bed and matress for my little son, and we so desire to live!"

Name: Alex Kravets, 06.01.2015

City: Lviv reg., Didyliv village

Diagnosis: Werdnig-Hoffmann spinal muscular atrophy syndrome, type 1