Three short stories about three special children.
Marcus
Marcus has a congenital heart defect – single ventricle heart, and is also diagnosed with autism and intellectual disability.
His everyday life is determined by his own rules, customs and rituals. Anything new causes him unrest and fear.
His family aims to adapt to him. Because of Marcus’s heart problems they are very careful not to upset him.
His room means peace and security for him, where he spends most of his life. It is the place where he watches the world from.
Dorina
Dorina (3) was born with glaucoma and exophthalmos (bulging eyeball). Due to her cleft palate and laryngeal incision, she can’t eat or drink, her mother feeds her through a stomach catheter using a special machine. Because of her weak immune system, her mother doesn’t dare to take her outside much.
She can’t eat or drink due to her cleft palate, so she doesn’t know flavors. A special machine dispenses the liquid nutrient directly into the little girl’s stomach twice a day for about an hour.
Jakub
Jakub (8) is a first grader, trying to find his place in the world. His everyday life is permeated by constant fear of the outside world, change, unknown things, and unexpected events. Predictability is important to him—he’ll feel safe only if he knows daily schedule in advance exactly.
At the age of five, he was diagnosed with Autism Spectrum Disorder (ASD). His family moved to Nové Zámky from Eastern Slovakia to allow him to go to a special school.
“Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute – the inconsistency. There is little argument but that autism is baffling, even to those who spend their lives around it.”
Ellen Notbohm
Bio
András Á. Cséfalvay (b. 1987, Dunajská Streda, Slovakia) is a photographer and photojournalist. He holds a teaching and design degree. Over the past few years he has won several prizes in the Slovak, Czech and Hungarian Press Photo competitions with his documentary projects about special people.
Created with the financial support of the Fund for the Support of the Cultures of National Minorities.
Previous series
Ágnes
Ágnes and her brother József live in a small village in South Slovakia, just few kilometers from the Hungarian border. József is spending his life taking care of his mentally and physically disabled sister, who is unable to walk or talk since childhood. They live in modest circumstances.
Because of her disease Ágnes cant sit in wheelchair. The old pram is the only
place, where she feels comfortable.
Vivien
Vivien is a 16-year-old girl from Western Slovakia, diagnosed with a rare type of autism spectrum disorder. Her behaviour is extremely aggressive – besides hitting her own face she kicks or punches anybody (including her parents) who tries to approach her.
Vivien’s aggressive, self-injurious behaviour began at the age of 4–5 by hitting her head against the furniture and wall. Before, her parents were not aware of their daughter being different from other children. Her condition gradually worsened. The only way her teachers manage to control her self-injurious behaviour is pulling Vivien’s finger backwards. After school, Vivien spends the rest of the day at home, bound to a chair. At night, she can only sleep after taking drugs.
“András Á. Cséfalvay is documenting lives in which relationships, the delight of movement, and the support of the family are much higher appreciated.
Lives in which different things are unreachable, faith has different meaning. Different families, different personalities—but the joy in their eyes is common.
Photographs of András Á. Cséfalvay are taking us closer in to the intimacy of three families.”
(Viktória Salgó, art historian)
Lili and Emili
Lili and Emili are twins. Emili is healthy, Lili developed cerebral palsy after delivery. Their parents do everything they can to improve Lili’s condition, strengthen her muscles, thus, help her be able to sit, crawl, stand and walk on her own.
Tomi
Tomi is an 11-year-old boy diagnosed with xeroderma pigmentosum—a rare incurable genetic disorder, that causes extreme sensitivity to sunlight, and a very sensitive skin prone to developing scars and cancer spontaneously. When he wants to go outdoors during daylight, he has to wear protective clothing and face shield that offers sufficient protection from UV light.
Réka
“What is too loud? Only the quiet. The quiet in which one bursts as though in a vacuum.“
E. M. Remarque
Instead of words, Réka communicates with her eyes. Due to cerebral palsy she is unable to speak, move independently, and needs her mother’s help in everything. Her thoughts are locked up in her body. She is a very smart and gifted girl, her abilities are excellent compared to her condition. She managed to learn to read and count. Currently, her mom is teaching her at home in various creative ways. In addition to learning, they exercise every day to strengthen Réka’s muscles. With her best friend, Zoé—with whom they have known each other since they were little girls—they are playing board games, painting, and having fun.
