Nikola - her eyes are begging for help❗️We are asking for support because otherwise we are going to lose her forever...

Our daughter, Nikola, should currently celebrate her third birthday. There is no place for happy plans and carelessness as our days are filled with fear. Our world fell apart...At the end of July, we heard a diagnosis that no parent should hear – Rett Syndrome. A cruel disease, progressing and taking our child away bit by bit...

We are helplessly watching Nikola losing everything she had been working hard for. Each day is a fight not to lose her completely. And we, as parents, have only one dream – to save our daughter and keep everything that the disease wants to take away. For this reason, we are begging for help – without your support, we do not stand any chance in the fight for our child.

Until recently, Nikola had been a very curious, cheerful and active child... The embodiment of health, happiness and hope for the future. Her smile and eyes that understand everything – Rett has not taken that away yet. We were so happy when she said her first words... She used to call us: “mum, dad”... We never suspected that these words would soon become only a memory.

Something started changing in the behaviour of our daughter. Day after day, bit by bit, she started losing her acquired skills... She was speaking less and less until she stopped, her development was hindered and communication with her was decreasing... At first, autism was suspected... We were doing everything to help her. Therapeutic kindergarten, doctors, therapists, speech therapist, hospital... During a session at hospital, the movement of Nikola’s hands was noticed and we were recommended to do genetic tests. We paid for them to have them done sooner. We had been waiting for them for 8 long weeks and then they finally came...

Now we know – Nikola is suffering from Rett Syndrome, one of the most cruel neurological diseases which takes away everything from a child – movement, speech, contact, independence and body control. Rett Syndrome predominantly affects girls. They are called “silent angels”... Beautiful and vulnerable like angels, they cannot say a word, and because of the disease, they are trapped in a body that does not want to listen... A body that has to fight with epilepsy, seizures, heart diseases and other issues.

At first, Nikola stopped speaking, communicating her needs and making contact. Now, there is another stage of her regress. Nikola lost her purposeful hand skills. The only thing she can do with her hands is squeeze them... As if she wanted to communicate that something is wrong. Rett Syndrome is a progressing disease, each day without treatment is taking away skills from our daughter and the possibility to live a regular life. Nikola can still walk, is responsive and able to look at us... But we are frightened as we do not know what is going to happen next.

In Poland, there is no treatment for children like Nikola, there is only rehabilitation... Fortunately, medicine in the world advances and there are endeavours to save children like our daughter. There is hope. From 2023, the first medicine for Rett Syndrome is available in the USA. It is administered as a syrup. It does not treat the disease but hinders its progress... It gives Nikola a chance to be in the best possible condition while waiting for a gene therapy that is currently in clinical trials overseas.

This therapy costs a couple of million PLN a year and we are not able to bear that cost on our own. That is why we are asking for help. This fundraiser is the only way to save Nikola’s childhood and future.

We love our daughter more than anything in the world. Each day, we give her a promise that we will do everything in our power to save her. The disease takes away her strength but it will not take her life, we will not allow it. It cannot take her away from us. That is why we are begging for help – please, support our daughter. Each donation, each share is a step towards Nikola’s chance to live, love and enjoy her childhood...

Only together we can give our daughter a chance for tomorrow...

We are grateful for any form of support,

Nikola’s Parents.