Adin and his family
Ádin Duchenne-féle izomdisztrófiával él, egy súlyos, örökletes betegséggel, amely az izmok fokozatos gyengülésével jár. A 2024-ben kapott génterápia sokat segített, de az állapot megőrzéséhez további kezelésekre és hatalmas anyagi erőforrásokra van szükség, hogy Ádin továbbra is esélyt kapjon a fejlődésre.
Hannah and her family
Life has been a struggle for Hanna, now 7, since birth. The little girl suffered from renal vein thrombosis in the womb, and 3 strokes at birth, as well as cerebral palsy and epilepsy. Her mother was told that her child would vegetate like a houseplant. The doctors practically gave up on her, but her mother and the family did not give up.
Alíz and her family
"We started life with a big disadvantage, but nothing is impossible for us!" Alíz is almost three years old, but her life has been filled with struggles and difficulties. Doctors said she would never have contact with the outside world, she might not even be able to hold her head up, and she would never be able to smile.
Holly and her family
Zsuzsanna Holli's mother experienced a parent's worst nightmare before the birth of her second daughter. Her first-born daughter was diagnosed with an incurable disease and had to be placed in a home where she could be provided with the conditions, care, and medical treatment appropriate to her condition. Zsuzsa was completely devastated, but fate placed Gergő on her side, who accompanied her throughout this period.
Anna and her family
Anna was born naturally as her first child, exactly at the 40th week, to the day. She had a beautiful, undisturbed birth. There was great joy in the family. At 6 weeks, during the mandatory hip and skull screening, the parents were informed that they saw ventricular dilation on the ultrasound. An MRI scan was recommended for a more accurate diagnosis.
Unfortunately, the suggestion that several areas of the brain developed differently or incompletely was confirmed: the main diagnosis was a rare brain developmental disorder, polymicrogyria. This lesion covers almost the entire brain, and the corpus callosum, the nerve fiber connecting the two cerebral hemispheres, was partially developed, but the MRI findings also showed Septum Pellucidum agenesis and hippocampus malrotation.
Bence K. and his family
Bence was born prematurely at six months, with an extremely low birth weight. He spent six months in the Debrecen clinic. During those months, he was in crisis situations several times, fighting for his life.
Doctors told his parents that the boy would only live until he was 5 years old at most.
He was born blind in both eyes. During his predicted 5 years, Bence suffered several strokes, had his colon removed, and developed epilepsy.
Melinda and her family
Melinda was a breech baby and was born naturally at 33 weeks. The doctors forced a natural birth instead of a cesarean section. As a result, Melinda suffered from a lack of oxygen, which led to a stroke. She had to be resuscitated after birth.
The little girl was released home after 3 weeks, but the parents were not informed about their child's illness. At the age of 1, they took Melinda for a check-up, when they learned that their daughter suffered from a neurological and physical disability. Their daughter will neither be able to speak nor walk. The family was sent for genetic testing, which came back negative.
S. Elizabeth and her family
Elizabeth was born in 2023 as a completely healthy baby. However, in the 90th minute of the golden hour, she suddenly stopped breathing. Her parents immediately notified the nurse, who immediately took her away and began resuscitation. The first attempt was unsuccessful, only the second time, with mechanical assistance, managed to save her life. Unfortunately, by then she had developed a severe oxygen deficiency, so she was transferred to Semmelweis University that same day, where she was hibernated for 72 hours. Despite all this, the doctors determined that approximately 60% of her brain was damaged.
N. Máté and his family
Máté was born with a very rare genetic disorder that affects the muscles of the body. On the 5th day of his birth, his parents noticed that he could not hold his tiny head properly. They visited their family doctor with their observations, who reassured them that Máté would only develop in a few days. Unfortunately, this was not the case. My 4-month-old had already become so visible that his neck was really weak and he was lagging behind in large movements. He could not lift his head. Then, on medical advice, we were admitted to a developmental center. He was taken to private therapies with him: Dévény and Tsmt exercises. Unfortunately, it did not bring much success to the family's life. At 11 months old, he was seen by a neurologist specializing in muscle research, who diagnosed mild neck and shoulder girdle hypotonia. His parents were not reassured by the diagnosis and a full neurological examination was initiated in Hungary, in addition to therapies. The neurological examination did not give an accurate diagnosis of little Máté's condition.
Greg and his family
Gergő was born on June 4, 2020 in Szeged. At the age of 4 months, he was diagnosed with Duchenne Muscular Dystrophy (DMD), a disease that causes progressive muscle wasting. At that time, there was no cure, but in 2023, Elevidys gene therapy was approved, so we started the collection to save our little boy's life.