Укр / Eng


Age: 2 years 2 months 1 day
Type: SMA І
City: Klevan (Rivne oblast)

Parents' accounts:

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We are the parents of a child with a deadly disease! We urgently need your help, because time is the most important thing for Dana! Type I SMA—spinal muscular atrophy—is a terrible disease that takes away strength, hope and life every day. Our daughter's muscles don't develop, they die. Until recently, children like our daughter were doomed to death in agony. Today, medicine gives a chance—terribly expensive therapy can stop this disease.

We are facing the biggest challenge that parents can take. We need to go ahead of time, raise an incredible amount of money and give our child a chance to live. Now or never—our family is an ordinary family: mother Irina, father Vasily, eldest daughter Marina and little Dana. Before Dana's birth her mother worked as an operator at a gas station, her father was a driver. Dana was born in January 2021, and our family's happiness has no borders. During the two months of our baby's life, we were worried about her health, because she did not get stronger, and on the contrary, her body listened to her less and less. Attempts to improve the situation with rehabilitation courses have not produced results. At a routine pediatrician's examination in April, we were first informed about the suspicion of SMA. This information sounded like thunder in the clear sky. It seemed that it couldn’t be true, it could not be with us. We hoped to the last and believed that this was a terrible mistake, but no…On 22.06.2021 we were given an accurate diagnosis—SMA type I. No one could even think of such a terrible disease hiding in the body of our daughter. Children like Dana can’t turn two years old without treatment, they die. At this time we learned that Dana's life has a price—it is the price of the most expensive medicine in the world. We have opened an urgent collection to save the life of our baby. Now we can neither eat nor sleep. At night we make soap, and during the day between procedures for Dana, we knock on many doors, trying to find salvation for my daughter. We appeal to all people, we need you, your big hearts, who will love our daughter—to make her the best gift—a chance to live without this terrible disease. We need your hearts that will open to Dana, your eyes that will look with hope, just like ours. We need your countless prayers to overcome every barrier.

Before Christmas, we need to raise an incredible amount—$2.05 million—to buy the most expensive drug in the world, Zolgensma. We understand that it sounds like fiction, but more than one family has succeeded in Ukraine. We kindly ask you to help financially or informationally. We believe that working all together, we will have time!