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.

My name is Ondra, I'm 26 years old and since I was 23 I've been living with the knowledge that I got Tay-Sachs disease. As a child I did karate, later from the age of 11 to about 21 I devoted myself to aikido. Probably thanks to these sports, especially aikido, where I learned to fall, I owe it to the fact that I did not seriously injure myself during falls, which unfortunately happen. I also liked to do other sports activities, such as cycling, skiing, swimming, hiking and much more. Unfortunately, the illness gradually deprived me of what I loved. At the moment, I mainly do a lot of rehabilitation, I do recommended supportive exercises, in the hospital I exercise on motomed, in the pool, I exercise with a rehabilitation nurse, I go for short walks. My problems with movement, fine and gross motor skills and speech problems began to manifest themselves around the age of 15. I had a very hard time coping with my gradually deteriorating communication with others. My speech skills limit me very much in the social area. I had to include speech therapy exercises in my daily program, also due to the fact that I began to have difficulty swallowing. Due to illness, I had to give up my dreams, I wanted to do business in the confectionery industry. I try to keep working, to be useful. The work team gives me the feeling that I belong to a social group. I'm interested in everything about IT, AI, computer games, I like to go to the cinema, listen to modern music, I like to meet friends who like the Comic-Con genre.

My name is Bára, I am 22 years old and I live with Tay–Sachs disease. From a young age I trained in synchronized swimming, which may have helped slow down the onset of symptoms. At 17, I spent a study year in Canada, but due to the pandemic I became less active, and after returning I experienced a significant decline in motor skills. Today I face challenges with running, jumping, climbing stairs, balance, and sometimes even speech. Despite this, I remain active. I regularly go to the gym, swim, and attend physiotherapy, which has helped stabilize my condition. I am currently studying Japanology at Charles University. In my free time, I enjoy reading, traveling, cooking, and baking. While the disease has limited me, I continue to seek out ways to live fully and actively.