I. Buttercup and her family
Buttercup developed beautifully after birth, there was nothing to indicate that she was not healthy.
At the age of 7 months, she had a febrile seizure and was admitted to the Children's Clinic. She was diagnosed with epilepsy. The tests began. Boglárka was one and a half years old when a genetic test diagnosed her with Wolf Hirshorn syndrome.
Wolf-Hirschhorn syndrome (WHS, 4p-) is a genetic disorder caused by a gene defect on the short arm of chromosome 4 or a translocation from it to another chromosome.
M. Dorina and her family
Dorina was raised by foster parents for 5 years, where she experienced a lot of stress and great heartbreak in her life. As a result of the mental strain, she developed epilepsy. On April 15, 2022, her mother regained custody and has been under her supervision ever since. They go to a neurologist for a check-up every year.
András K. and his family
Andriska was diagnosed with heart failure and a brain aneurysm at week 19.
Continuous monitoring was started to prevent the little boy from having a stroke. At 37 weeks Andriska was born. He was admitted to intensive care after birth and was operated on the next day. It was necessary to implant a shunt to drain the brain water.
The last surgery was in November 2024, but the mr scan showed that this surgery has to be repeated every year or every six months.
Bence K. and his family
Bence is turning 23 this year. Bence was born prematurely at six months, with an extremely low birth weight. He spent six months at the clinic in Debrecen. During those months, he suffered several critical episodes and fought for his life. At birth, it was established that he was blind in both eyes. During the five years he was predicted to live, Bence suffered several strokes, had his large intestine removed, and developed epilepsy. Bence still feeds from a bottle, as he has not developed the ability to chew and can therefore only be fed liquids. His vocalisation is nuanced; he can distinguish between pleasant and unpleasant situations and recognises family members. He has made significant progress in his mobility compared to his previous condition. Until the age of three, he was a helpless baby who could only lie down, but then, as a result of the interventions, his development began; he was worked with by a typhlopedagogue, a physiotherapist and a speech and language therapist. He is currently crawling and climbing.
Levente L. and his family
In 2020, Levi was diagnosed with Duchenne muscular atrophy, then considered an incurable disease. However, in 2023, a new gene therapy, Elevidys, was developed that could significantly slow the progression of the disease. It's a treatment that we would like Levi to have, but it costs US$2.9 million.
W. Flora and her family
Flóra was born with bilateral clubfoot in 2013. After endless treatments and persistent research, she was diagnosed with the rare genetic disorder Charcot-Marie-Tooth type 2C, which causes her to use a wheelchair. She attends after-school development sessions 3-4 times a week.
T. Greta and her family
Adél Gréta Takács was born on 4 October 2021 by emergency caesarean section. From the very first days she faced serious health challenges. A few weeks after her birth, it was discovered that she was born with Robertson's translocation Down syndrome. At three weeks old, she suffered a stroke while in hospital and was diagnosed with epilepsy a few months later.
Evelin Bagyarik and her family
On May 28, 2021, Evelin (then 16 years old) was in a car accident. While sitting in the back seat of the car, a car traveling at high speed crashed into them from the side, Evelin was thrown out of the car. She fell onto the concrete and suffered a very serious head injury. That night in the hospital, the doctors said that she would not survive. Then the parents had to prepare for the farewell. Miraculously, Evelin survived the night. After months of struggle, they were able to stabilize her condition. Evelin was in a coma for 4 months
H. Tibor Erik and his family
Erik Tibor H. was a 5.5-year-old, lively, healthy boy until he was diagnosed with Acute Myeloid Leukaemia in October 2024. On that day, he underwent bone marrow sampling under anaesthesia and two units of blood were drawn for low haemoglobin.
S. Leopold and his family
Leopold was born prematurely in 2019. For a long time, it was not known why he was not developing like a normal child, until he was diagnosed with Prader-Willi syndrome at the age of three. This is a rare genetic disease that causes a lack of feeling full, so Leopold is always hungry. The disease has many other symptoms, so his parents need to take extra care of him.