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
Their story began in March with a stomach ache that brought their son to the hospital in Nyíregyháza. From there, they were taken by ambulance to Debrecen, where tests revealed a tumour in the boy's left kidney, which was found in several places in the chest and abdomen.
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.
N. Jasmine and her family
Jasmine was born in 2010 with hip spica and hypotonic muscles. She and her mum have been going to regular rehabilitation sessions ever since. The hip dislocation was corrected by surgery, but over time it was discovered that she has an incurable muscle disease (Urlich muscular dystrophy), which is a constant deterioration.
István H. and his family
István was born at 24 weeks, weighing 600 gr. On the fourth day of life he suffered the most severe stroke. The resulting hydrocephalus kept him in intensive care for seven months. During this time he underwent several life-saving operations. All his premature infant illnesses were cured with severe psychomotor deficits. As a result, she has multiple disabilities: mobility impairment, moderate intellectual disability and visual impairment. He also has asthma, epilepsy, wears a shunt and eats mashed food.
F. Mira and family
Mira was born in December 2015 at 37 weeks' gestation, weighing 2880 grams and with an Apgar score of 9/10. A residual haemorrhage in her brain was detected at birth, so tests were started immediately. After a series of MRI, EEG and neurological tests, he was diagnosed with axial hypotonia, which significantly affected his motor development and psychomotor skills.
M. Diána and her family
Diána is a girl born in September 2015 who lives with a severe disability. She has limited mobility, was born with cleft palate and wears a shunt. She cannot drink independently and has difficulty feeding orally.