"Do not try to find the proper shoes, he will stop walking anyway", this was what I heard after my 2-year-old, Andrey was diagnosed with spinal muscular atrophy, a progressive muscle loss disease. The doctor was not able to give us any kind of advice, he just told us to accept that he will be the wheelchair user. And in a month after this, the first and the only drug to stop the progression was registered in the US. In eight more months, it was registered in the EU, however, it was not available where we lived. All this time we worked very hard, to keep all the abilities Andrey had! Our little 3-year-old boy had physiotherapy sessions 5 times a week, massage sessions 3 times a week, and aqua therapy 4 times a week. We really gave it our all.
It took me 2 weeks to pack our entire lives and to relocate to another country, where Andrey could start his treatment. Andrey was 3 at the time. It was not easy at all since we had another school-aged child, whom I had to move to another country, to another school in the middle of the school year. But is anything impossible, if you want to treat your child?
Still has to work hard
Even after starting the treatment with spinraza, Andrey still has to work hard. This little 5-year-old warrior has his physiotherapy 3 times a week, plays tennis 2 times a week, has swimming lessons 2 times a week, box training - once a week, and horse riding lessons 2 times a week. Andrey's moto at 5 years of age is #trainanddonotgiveup. Do not ask me, when I have time to take him everywhere, as his older brother also has his own schedule :) But it is all manageable, as yoocandoanything! And look at him, dear doctor, who said I do not need to bother about the shoes, do you still think he will not need them?!