A painful topic for Pavlo. 2

Like every mother, Pavlo’s mom listens keenly to her son’s dreams with despair and pain in her heart of gold. She hearkens to him, because it wasn’t always thus. "Hello, my name is Pavlik, I’m 13 years old. I have spinal muscular atrophy (SMA). I like reading, communicating with my peers. But I can’t jump, run fast because my legs are bad. That’s how the boy always tells about himself, with notes of optimism because he hopes for treatment in our country". Spinal muscular atrophy is a disease which wasn’t expected in the lad’s family. However, 13 years ago it suddenly came to their home.

Until Pavlik was one year of age, the family lived a life like all families live, planning and dreaming. They didn’t know what fate awaited them. Mother remembers that time with a heavy heart. While all the children began to walk, she was worried about Pavlo's constant incomprehensible falls. Then their world silently crashed down. Hospital, tests, various specialists, vague diagnoses and especially painful words of doctors: “Your child has an incurable disease, called SMA”. They have fought it themselves for 10 years because they had a faith that drugs would be invented. Luckily, the medicine was invented and finally registered in Ukraine. But all Ukrainian children needed to be provided with it at the state level. While Pavlik is waiting for the state treatment, he has already been treating at Bersenev Medical Center for the fourth year. He takes injections and massages on a regular basis in order to prevent SMA from growing progressively worse. Therefore, we are collecting money for a new course of treatment in a rehabilitation center.

Now the family is not alone – they have received trust-based recommendations and made lemonade out of lemons. Constant therapeutic massages, injections, courses with the rehabilitation specialist are done in order not to lose the acquired skills and to wait for such a desirable and longed-for treatment.

The boy's mother cherishes hopes for SMA being abated or at least won't progress and take strength away and her son will be able to live like all children. She believes that SMA medicine will be available soon and is grateful to all of those who are hastening its appearance in our country.