Simi's story

A little boy who wants to move freely

Simi is a cheerful, curious little boy who loves his family, fishing, nature, cooking and baking. He loves to play, move and explore the world. But for him, freedom of movement has never been a given.

A History of a Rare Disease

Simi was born in the summer of 2015, he came to the family as the second son. He seemed to be a healthy baby, but at the age of a few months, it was already clear that his motor development was different from usual. He was tired, did not like to move, and it was increasingly difficult to walk. By the age of three, his growth had also slowed down, and his bones and joints were gradually deformed. For a long time, they did not get an answer to what was happening to him. After several different diagnoses, at the age of almost five, a genetic test confirmed that Simi lives with pseudoachondroplasia.

It is a rare, lifelong bone and cartilage formation disorder. Bones do not develop properly and are constantly deformed, and joints are destroyed very early. For Simi, everyday life was increasingly defined by pain and limited mobility.

Then hope appeared.

In 2022, the family found the opportunity of the European Paley Institute, where they could correct the deformities of Simi's legs with a complex surgery that would also allow for leg extension.

After the operation, Simi could be about 10 centimeters taller and, more importantly, his movement and independence could improve significantly. He would like to sit on the toilet alone, wash his hands, get in the car, join in the schoolyard games, go on trips and simply move more freely. However, the treatment would have cost almost 90 million forints, so they first tried to find a solution in Hungary.

Another twist

The family waited two years for the necessary series of treatments, consisting of a total of eight surgeries, to begin in Hungary. In the meantime, Simi's condition was deteriorating, and by 2024 he could only walk a few meters. In the mornings, his legs often hurt, and all he said was:

"My legs are fooling around again today." ***

He travelled by balance bike for shorter trips. By the end of this year, it became clear that he would not be able to operate on him at home. So in December 2024, a fundraiser was launched. The cooperation was huge. With the help of runs, cake sales, auctions, fishing competitions, theater performances, family days and countless other charitable initiatives, more than HUF 50 million was raised in half a year. It seemed that Simi was finally closer to surgery.

Then, in May 2025, everything changed.

Doctors discovered that the spinal cord in Simi's cervical spine was dangerously narrowed: at a critical section, only 3 mm remained instead of the normal of about 13 mm. It was no longer about his legs.

This endangered Simi's life.

In July 2025, the family traveled to the United States, where Simi underwent life-saving cervical spine surgery. The operation was successful, and Simi was given a new chance. However, the more than HUF 50 million raised, which was originally intended for the leg surgery, had to be used for the life-saving intervention and its costs.

And finally he made it to Warsaw.

The family felt that they could not start another fundraising campaign, so for the third time they turned to the Social Security Service to support Simi's surgery in Warsaw. This time they were successful.

Simi is now in Warsaw with his family. He underwent surgery at the beginning of August and the long-awaited leg correction treatment and rehabilitation have begun. However, the long journey is not over yet, Simi is waiting for further rehabilitation, surgeries and challenges.

Why are we collecting now?

We are now raising money to support Simi's family's stay in Warsaw and the purchase of equipment for treatment and everyday life. Simi doesn't want to be sorry. He wants a chance. To be able to move more freely. To play. To go on a trip. To be able to do more and more things on his own. To simply be a child. Let's help him with that!