My name is Viki, I'm 27 years old and I come from Slovakia. I spent my entire childhood in constant motion, from dance, ballet, tennis, fencing to skating. At the age of 13, I began to notice that I had trouble running and jumping, inexplicable falls on flat ground began to appear, objects fell out of my hands. In 2021, I was diagnosed with Tay-Sachs disease by genetic testing. At that time, I was no longer able to climb the stairs on my own, to stand up from a sitting position without the help of my hands. Frequent falls made my everyday life unpleasant. In 2023, I gave birth to my son Adam. He is an attentive and sensitive boy who realizes that his mother is different from other mothers. Currently, I exercise twice a week with a physiotherapist, I help myself with a support stick when walking, and if I can, I prefer to avoid stairs. This is my story – the story of a girl who turned into a woman and a mother and who, despite this disease, decided to live life to the fullest. My body may be weakening, but my heart and my will to live for my son will never weaken.

My name is Dominika, I'm 26 years old, four years ago I was diagnosed with Tay-sachs disease in the adult form. It was discovered also due to impaired coordination of the lower limbs., I gradually began to notice, impaired walking up the stairs. My sibling also has this disease, so far it does not limit her in everyday life in any way. I now climb the stairs only with support (typically with the help of a railing). I'm working on improving my gait Sometimes there are also minor difficulties in normal communication, but otherwise the disease does not significantly limit me except for worse walking up the stairs.

My name is Monika, I'm 44 years old. I've been living with Tay Sachs disease for several years, my health began to deteriorate significantly after I was 40 years old. Unfortunately, on the basis of tests, it was found that all my daughters are carriers of this rare disease. I'm currently in a wheelchair, I can't go up or down the stairs, I'm very limited in my movement. Thankfully, I have a great friend who helps me with everything, including cleaning, bathing, cooking and regular household chores. But I do not lose my optimism and believe that a cure will be found that will make my life easier and better.

 My name is Radka and I'm 35 years old, I was born with Tay-Sachs disease. From the age of 5, the disease began to manifest itself, I spoke badly (stuttered). People thought I was weird. I've been fainting since I was 10 years old and had my head broken twice. Over time, it became difficult for me to climb the stairs, I couldn't climb the stairs without support. I won't get up from the squat alone. It wasn't until 2018 that I was diagnosed with Tay-Sachs disease, an adult form. At the age of 28. I try to fight the disease. I walk outside with a walker and I have trekking poles at home, I go to the spa and regularly rehabilitate. A miracle even happened and I'm pregnant this year, hopefully everything will be okay - me and the fetus.

My name is Marketa, I'm 22 years old and I was diagnosed with Tay-Sachs disease three years ago. The disease was discovered thanks to another member of our family, who began to show the first symptoms of this rare genetic disorder. Gradually, I also began to notice difficulties – for example, I have a problem getting up from a squat or climbing higher stairs without support. Sometimes there are also minor difficulties in normal communication. So far, the disease has not limited me significantly. I like to travel and cook.

My name is Nela, I'm 32 years old. I was diagnosed with Tay-Sachs disease in 2017. Until I was 17, I liked skiing, cycling, swimming, going on long trips. Then I started falling while skiing, there were also falls when riding a bike and I couldn't stand up from a squat. Gradually, motor skills deteriorated. I started to help myself with trekking poles, later I replaced them with a walker. Today, I can hardly stand without support. My stride has shortened significantly, so I use a wheelchair for longer distances. I exercise regularly and attend rehabilitation. I have also been to rehabilitation several times. I worked in a sheltered workshop for several years. Now I visit FOKUS, which is a multifunctional community center. FOKUS gives me the opportunity to be in a team of people, and despite my handicap, to devote myself to various activities. Thanks to my family and friends, I can still go on trips and concerts, which I love so much.