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.
B. Abel and his family
Ábel has recently been diagnosed with Duchenne muscular dystrophy. This is a severe, rare genetic disease that causes gradual muscle weakness, followed by complete muscle atrophy, eventually leading to total muscle wasting. There is a special gene therapy abroad that could stop this process, but it costs up to 1.3 billion forints.
Noémi M. and her family
Noémi is a special 3-year-old girl whose start in life has not been easy. She is the second child in the family, alongside a healthy 14-year-old brother. Noémi suffered a severe stroke at birth which left her with permanent damage, including brain atrophy. The brain injury also caused her to suffer from epileptic seizures, which she is trying to control with medication.
F. Döme and his family
Döme is a 2-year-old boy born from a compromised pregnancy at 28 weeks, by emergency caesarean section. He was born at just 990 grams and 38 cm. He was oxygen deprived as a foetus and was on a ventilator for some time after birth. He required oxygen until 10 weeks of age due to mild bronchopulmonary dysplasia (BPD). A cranial ultrasound revealed that he had suffered a grade II and III stroke and required ventilation again at two weeks of age due to enterococcal sepsis.
P. Petra, Tamás and family
The Pihokker family is raising two children with long-term illnesses and special educational needs. The family's daily life is characterised by the organisation, provision and financing of ongoing development and therapies.
Their youngest child, Tamás, now 2.5 years old, was born at 35 weeks with an Apgar score of 6/8 due to a CTG anomaly. He spent the first weeks of his life in the NIC/PIC ward. His motor development lagged behind his peers at an early age and he was diagnosed with generalised hypotonia. In November 2024, genetic testing confirmed that Thomas was affected by the infantile onset form of Charcot-Marie-Tooth (CMT 3) disease, which underlies his movement problems. He is now able to sit steadily, crawl regularly, cling to furniture, stand upright, and with the help of a rolling walker and AFO, he is becoming more adept at walking as he develops - but he cannot yet walk independently.
Peter L. and his family
Peti has recently been diagnosed with Duchenne muscular dystrophy. This is a serious, rare disease that causes gradual muscle weakness, followed by muscle atrophy, eventually leading to complete muscle breakdown. A special gene therapy could be available abroad that could stop this process, but it would cost around 1.3 billion forints.
U. Alex and his family
Alex will be one year old in October. The investigation was triggered by a prolonged jaundice that has not gone away even after two months of age. Blood tests showed abnormally high liver function values. The local paediatrician was thorough and sent Alex for further tests at the hepatology department. There, his CK levels were measured twice - both times they were found to be extremely high: first 19,000 and then 11,000.
Csaba Sz. and his family
márciusában kezdődött a történetük egy hasfájással, ami miatt bevitték a kisfiukat a nyíregyházi kórházba. Innen már mentővel tovább is szállították Debrecenbe, ahol a vizsgálatok során kiderült, hogy a kisfiú bal oldali veséjében daganat van, amely a mellkasban és a hasban is több helyen megtalálható.
VIII. Signing ceremony
L. Liliána and her family
Liliána was born with cleft lip and cleft palate on 06.09.2018, as the youngest child. She has a chromosomal abnormality, Dandy Walker syndrome. She wears hearing aids and glasses due to bilateral sensorineural hearing loss. He cannot walk, but can sit independently and can even get around sitting up. He loves to explore the world around him, to discover wonders. He can pull himself up and climb on the sofa by himself. This is also due to the fact that he attends cognitive and movement development sessions several times a week.