Alex
A boy who has shown from the first moments of his life how powerful a small person’s will to live can be.
Alex’s story began before he was born. Tests during pregnancy showed a CHD7 gene mutation responsible for CHARGE syndrome. With each further examination, additional abnormalities were discovered. The prognosis at the end of pregnancy was extremely serious, but Alex showed an extraordinary will to live from the start.
After birth he was diagnosed with, among other conditions, a complex heart defect including TAC 1A, VSD and ASD, a cleft lip, palate and alveolar ridge, choanal atresia, coloboma affecting vision, severe hearing impairment, reflux and other problems requiring treatment.
Alex has undergone more than 20 operations and procedures. One of the hardest periods followed heart surgery in his first year of life. He developed severe complications including intestinal perforation, a stoma, peritonitis, sepsis and kidney failure requiring dialysis. Alex had to be resuscitated and remained in a medically induced coma for around two months.
He also underwent several nasal operations, cleft surgeries, ear procedures, gastrointestinal treatment and many other interventions. In the first years of his life he was fed through a PEG tube. Today he uses a cochlear implant on one side and a bone-conduction implant on the other and remains under the care of many specialists.
His story is not only a story of operations. Today our main fight is for development and the greatest possible independence. Alex receives physiotherapy, occupational therapy, speech therapy, osteopathy, hippotherapy, hearing rehabilitation and intensive rehabilitation programmes.
This work brings real results. After one rehabilitation stay Alex began crawling; after another he made a major step towards eating independently. What may seem small to others is a huge victory for us.
Since 2025 Alex has attended a specialist school. He still needs substantial support with learning, communication and everyday functioning, but he remains a cheerful and curious boy who, after everything he has experienced, can still laugh, enjoy life and try again.
The main purpose of our fundraising is to provide regular intensive rehabilitation and therapy as well as the equipment and aids Alex needs. We want to give him the best possible chance to live as independently as he can in the future.
