This cruel disease is taking Laura away from us a little more every single day. ❗️Please help us in the fight against Rett syndrome.

Our world has fallen apart… At the end of May, we heard a diagnosis no parent should ever have to hear – Rett syndrome. One of the cruelest neurological disorders, which takes our child away from us piece by piece: her movement, speech, ability to communicate, independence, and control over her own body. As parents, we are asking you to support Laura, our brave little daughter!

May 21, 2026 – this is a date that will remain in our memory forever. It was the day our lives fell apart… The day we had to let go of the hope that “it’s only a developmental delay” and that our little girl simply needed more time and rehabilitation.

Rett syndrome primarily affects girls. They are sometimes called “silent angels” – beautiful and sensitive like angels, unable to speak, trapped inside bodies that no longer obey them. Bodies that must fight seizures, tremors, heart problems and many other complications.

It is impossible to describe what we felt when we heard the diagnosis – overwhelming sadness, fear, anger, disbelief? Probably all of it at once. No parent is ever prepared for words like these… But one thing we knew for certain: we would do everything in our power to save our little girl!

During the first months of her life, nothing made us worried. Laura developed like a healthy child – she learned new skills, babbled, and began saying her first meaningful words: “mama,” “dada,” “grandma,” “baby,” “where,” “you,” “me.” From the age of 8 months, Laura began Bobath therapy because she was not sitting like other children her age.

Over time, however, instead of continuing to develop, we began to notice a frightening regression. Laura gradually stopped saying the words she had learned, stopped babbling, and began losing skills she had already acquired.

Simple activities became difficult for her – maintaining eye contact, feeding herself with her hands, or holding her favorite toy.

Today, our little girl is almost two years old. She cannot walk, stand independently, speak, point with her finger, or communicate her needs. Every time she cries, we are left wondering – is she hungry, tired, having a seizure, or is the disease taking away another skill?

And yet, Laura never gives up. She fights every single day. Despite all the difficulties and the enormous effort it requires, she bravely continues rehabilitation and attends various additional therapies to support her development.

Instead of enjoying a peaceful and carefree childhood, playing on the playground with other children, she has to work every day just to prevent her condition from getting worse.

When we look into her eyes, full of hope for a normal life, and see the smile appear on her face, our hearts ache because we feel so helpless. At any moment, another regression may occur, taking away yet another skill.

We often look at other parents spending time with their children at playgrounds. We see laughter, running, swings, slides and the simple, carefree joy that is part of everyday life for so many families.

For us, that joy has become a dream – a dream of simply being able to play with our daughter, laugh with her and create memories without pain and fear of what tomorrow may bring.

Every day is a fight not to lose her completely. And as parents, we have only one dream – to save our daughter and stop the disease from taking away what she has left.

That is why we are desperately asking for your help. Without your helping hand reaching out to our child, we simply cannot win this fight.

In Poland, there is essentially no treatment available for children like Laura beyond rehabilitation. Thankfully, medicine around the world continues to develop and search for ways to help children like our daughter.

There is hope. Since 2023, the first medicine for Rett syndrome has been available in the United States, administered as a liquid. The annual cost of treatment exceeds PLN 2,000,000.

The medicine can slow the progression of the disease and give Laura a chance to remain in the best possible condition while waiting for gene therapy, which is currently undergoing clinical trials in the United States.

The amount we need to raise is unimaginable for one family, but it is possible with the help of hundreds of kind and generous people.

This treatment gives Laura a chance to make it to gene therapy and, hopefully, regain her independence, her childhood and the life that this cruel disease is trying to take away from her.

Laura is our first and only child. She was long-awaited, deeply loved and dreamed of. Her birth was the fulfillment of our greatest dreams – we wanted to show her the world, travel together and enjoy the simple moments of everyday life.

Today, we have only one dream: to give Laura a chance at health and a normal life.

That is why we are desperately asking for your help. Without your support, we will not be able to raise such an enormous amount of money. Every donation and every share brings us closer to our goal. This is an incredibly difficult fight, but we believe that together we can slow this disease and give our little Laura the happy childhood she deserves.

From the bottom of our hearts, thank you so much for your help!

Aleksandra and Mateusz Grzelak
Laura’s parents