First SMA diagnosis, than war -Little Alex needs you!!!

URGENT! Terminally ill boy and his mum had to flee their home in Ukraine.

All the fundraising had to stop, while they sought refuge from the cruel war in Ukraine.

Unfortunately SMA doesn’t wait, it’s taking toll on Alex’s health and time is running out.

For Alex to have a chance at normal life he needs to receive very expensive gene therapy.

His life has been priced for over 2 million dollars!

Please don’t be indifferent to their suffering.

 

“Until recently, I was a happy expectant mother. I dreamed of my unborn child’s life - it was supposed to be good, safe, full of happiness ... I was planning his future. I was wondering what he would look like, what his voice would sound like, what he would like to be when he grows up. I did not think that soon I would worry if Aleks would even live to adulthood, because he would suffer from a disease that until recently was still a death sentence!”

“We had each other, we had a little son, life was as I dreamed it to be! There was peace in the world. I did not think that anything would change, and everything changed in an instant .... Healthy boy - we heard in the hospital. We went home, days turned into weeks and than months.

Alex grew slowly, he moved very little, slept a lot. This worried me. I was looking for the reason, but I was considered an overzelous mother... I cannot count how many times I heard that my son is just a lazy one, that he would catch up and run with his peers at any moment. Unfortunately, time passed and Alex just lay there…”

“My son was 8 months old when the diagnosis was made. Telephone. Test results ... Black letters on a white background faded under streams of tears... Alexei has SMA, spinal muscular atrophy. It is a very rare genetic disease in which the neurons responsible for the work of the muscles die ... The neurons responsible for movement, swallowing, speaking and finally breathing - disappear, leading to death.

Until recently, there was no cure for this disease, children died in front of their parents before the age of two! Fortunately, this has changed over the last few years… Medicine is fighting SMA more and more effectively. The most effective and modern treatment is gene therapy, administered in the form of a single injection. It will provide Alex with a copy of a gene that he does not have (and because of which his muscles die). Not only will my son live, but he will also have a good chance of an efficient and independent life. Unfortunately - gene therapy must be administered as soon as possible, before the disease wreaks havoc... The child's weight must also not exceed 13.5 kilograms. It is also one of the most expensive drugs in the world - it is not refunded in Poland and its price is in regionof 2 million dollars.

My world has collapsed! At one point, we got caught up in a desperate race against time for the drug, with Alexei's future at stake! In despair, however, there was a hope that a miracle would happen, that we would be able to collect this huge amount... I was impressed by how many people with good hearts want to help my son... Nobody foresaw what would happen next... War broke out in Ukraine. Russia attacked our country...

I am with my son in Poland. We have escaped and cannot return to our homeland. I hope that my son will be able to continue treatment against SMA here... We rehabilitate my son. We have dedicated our whole life to fighting the disease. Consultations, classes with physiotherapists and prolonged stays in hospitals fill our calendar to the brim, and yet SMA is still one step ahead of us! My son is weakening at an alarming pace!

There are almost no volunteers to support us. The wonderful people who helped us, today they tremble themselves in fear for their lives, hide from bombing in cellars with their children...

Alex's fate is in your hands! I believe that we will stop SMA, but the son's lost skills cannot be restored! We are fighting the disease and we are fighting against time. Please, help us save our Son!