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.

My name is Karolína, I'm 28 years old. In 2017, I was confirmed to have an adult form of Tay-Sachs disease. When I was 17 years old, I began to show weakening of my thigh muscles, I started falling, I was clumsy, I had difficulty walking up the stairs or getting up. The disease is constantly getting slightly worse, today I can no longer get up from the ground on my own, from my chair, I can only climb the stairs with help. I can only walk with support or with a walker, with which I can walk no more than 500 m, then I'm tired. I also have problems with speech, I don't articulate well. Rehabilitation helps me to maintain good physical condition, especially the Vojta method. I exercise regularly and go on rehabilitation stays. I like animals, my great "partner" in the fight against a bad mood is the rabbit Miss Bela, whom I take care of with love.