Benji and his family
Our 3.5-year-old son Benji was diagnosed with Duchenne muscular dystrophy at six months old. As parents, we naturally try to do everything we can to somehow provide him with the best quality of life possible. There are several experimental gene therapy treatments for this disease in progress, and there is one (Elevidys) that is already licensed and available in a few countries. However, its price starts at 2.9 million US dollars.
M. Zselyke and her family
Zselyke's life presented her family with unique challenges when she was just 3 months old, when they started attending a developmental neurological clinic. Despite her motor organ problems and microcephaly, Zselyke works real miracles every day. Although she started crawling, climbing, sitting up and walking later, now, at 3 years old, she struggles with speech and movement, but with the help of the early developer, she is trying to catch up.
S. Mirkó and his family
Mirkó was born in 2015. He started life as a healthy-looking, happy little boy, and today he is a smiling nine-year-old child who faces an extremely serious disease with amazing courage: Duchenne muscular dystrophy.
Her family was diagnosed three years ago and since then they have been working hard to give Mirko the best possible future.
K. Marcell and his family
Marci developed similarly to his peers until he was 15 months old. He was already standing and walking independently at the age of 10 months. Then he received a vaccination, after which he started walking on his toes 3 weeks later, and within a few days he lost his ability to walk and at the same time his balance.
Their neurologist at the time diagnosed him with cerebral palsy. They sent Marc for an MRI, which showed signs of oxygen deprivation. This gave the neurologist an explanation for his suspicion.
In Marcin, the vaccination activated a little-known genetic disorder called Aicardi-Goutieres 7 syndrome. Marcell is currently participating in the first drug study in Austria, which his parents learned about through an American group.
D. Molli and his family
Molli is a premature baby and lives with cerebral palsy (CP), a central nervous system injury.
It arrived in August 2022, a little over 6 weeks earlier than expected.
Being a premature baby, all statuses are measured against his corrected - planned - date of birth, so although we were patient with his development, his unstable head and delayed interest in toys were a cause for some concern, so we booked him in for developmental neurology.
B. Gergely and his family
Gergő was born completely healthy at the 40th week of pregnancy, after an uneventful pregnancy. In the initial period, there were no abnormalities, but later the health visitor noticed that there was a delay in his motor development. Despite this, the doctors declared him healthy until he was 17 months old, giving the family a wrong diagnosis.
However, the parents were not comfortable with the uncertainty, so they requested a full examination. The examinations revealed that Gergő may have suffered from a lack of oxygen at birth, which caused ventricular dilation. As a result, a shunt had to be implanted.
B. Joel and his family
Bari Anton Joel was born on 22 July 2017 in Eger, Hungary. Soon after his birth, it became clear that he was a special boy: he had Down's syndrome. The first period was accompanied by many medical examinations, development and therapies, which were carried out at the Early Development Centre of the Down Outpatient Clinic in Budapest. Although the early days were filled with anxiety, his family stood by him with tremendous love and devotion throughout.
Levente F. and his family
Levente is an extremely persistent and determined 13-year-old boy who struggles every day to overcome the difficulties he faced early in his life and become a successful athlete. Although he was born healthy, he suffered a central nervous system injury and moderate hearing loss after being given an incorrect course of antibiotics. These two factors have had a significant impact on Levente's movement and daily life.
H. Dávid Péter and his family
David has a serious illness, leukaemia. David has been part of our „Adopt a family” programme for a year. Now they are looking for support again - they still need help.
David is also currently facing serious health difficulties. Although he seems to be better at first glance, he has frequent nosebleeds, muscle cramps and increased fatigue. He has regular check-ups at the Pesti úti hospital in Budapest and has now been referred for further tests. However, they will have to wait for the appointments. Any minor cold or weakness is almost immediately accompanied by a fever.
H. Sarah and her family
Sarah's life began with an extraordinary struggle when she was just 23 weeks old and came into the world. Born with twins and extremely premature, life's beautiful moments were about struggle and determination from the very beginning. Before she was even born, she had to face a ventilator, CPAP, and other life-saving devices. She had to be resuscitated on the 14th day, and since then, her everyday life has been dominated by health challenges.
Sarah fought hard for her life, was in critical condition for weeks and suffered from numerous infections. But her determination and willpower in the fight triumphed, and after more than 100 days, she was finally released from the hospital.