About this fundraiser

  • With this story, I would like to ask you all for a donation for our daughter, we will be very grateful, thank you ❤️❤️❤️







Eleonorka is a beautiful and cheerful little girl who is interested in the world around her. Like any small child, he touches everything, tastes it, opens it, reaches for every stimulus, rejoices in discoveries. At first glance, a healthy child, but the second you notice little things that indicate that everything will not be 100%. She doesn't walk or try to climb, sometimes she falls while crawling when her arms break and she hits her head.


Six months ago, she was a healthy little girl for the family, but in April 2023, everyone's world turned upside down. Eleonorce was diagnosed with a rare genetic disease that cannot be cured. We know it by the abbreviation SMA, in Elinka's case spinal muscular atrophy type II. The little girl's body muscles gradually weaken and with this comes a loss of momentum. This is also why Ela does not yet walk and does not make progress like other children.

"The daughter did not show any typical symptoms of this disease. I actually discovered the disease by accident. One day I opened an e-mail, where it was written that from January 2023, two more diseases became part of the newborn screening, namely the spinal muscular atrophy disease and then the SCID disease. And at the same time, there was a warning that children born in 2023, which is exactly what Eleonorka is, are allowed to do this examination retroactively," says the girl's mother Nikola Jacobi from Křižan in Liberecko. So she filled out the form, sent it to the lab, and waited. The laboratory requested a drop of dry blood, which is taken from the foot in the maternity ward, Nikola paid less than 500 crowns and waited to see the result of the test. She didn't think much of it, just had the test done to be sure. But the result was a blow for everyone. The test for SMA came out positive.

"We were extremely lucky that I accidentally discovered it in time. And so we have a good chance that Eleonorka will get back on her feet. However, our timely detection of this serious genetic disease does not change the fact that it is an incurable disease and it is necessary to give our daughter lifelong care. And I also want to inform other parents who have children of the same age that they can take this test in this simple way," points out Nikola Jacobi.

With this disease, it is really important to catch it as soon as possible. It takes longer, especially in the youngest children, for symptoms to appear. You can recognize it when the toddler suddenly stops climbing, does not turn from the stomach to the back, stops lifting the legs. The disease causes the nerves to die from the muscles, and you will only find out over time. "If I hadn't decided to do the screening, according to the doctors, we wouldn't have found out until she was three and a half years old," notes Jacobi

The insurance company does not cover anything

As with most similar diseases, in the case of Eleonorka, all care and financing of treatment or accompanying procedures is on the family. The insurance companies do not pay anything, and the girl was not even awarded social benefits, because according to the medical examiner, she does not appear to be particularly ill.

Since the spring, the little girl's parents have already paid a quarter of a million crowns for exercise, therapy and rehabilitation, and they are far from over, on the contrary. At the same time, the mother is on parental leave and the father goes to work and receives the same income as the majority of ordinary people.

Eleonora has been administered Zolgenzma, which is one of the most expensive drugs in the world and should be able to stop the nerves from dying. "But they are only short-term studies, about six years old, so it is not really known how long-term the effectiveness is. He's done that, including the necessary three-month isolation. After three months, the only thing we can do for her is practice, practice and practice," explains Nikola.


Organized by

Maxmilian Ziga

Hamilton, Ontario, Kanada