Yustyna stands up to a rare disease. 2

Yustyna was admitted to intensive care on the very first day after birth: the tiny girl could not breathe independently, her muscles would not respond, and her nervous system was barely reacting. The medical team did everything to win the fight for her life, and months in hospital lay ahead: mechanical ventilation, intubation, hormonal and antibacterial therapy, cerebrospinal fluid testing, and feeding through a nasogastric tube. And when the girl was not yet a month old – her heart stopped. Fortunately, the doctors were able to restore the rhythm, and Yustyna survived. Again.

But the trials continued. Yustyna developed internal hydrocephalus, which caused an increase in head volume – all of this required surgical intervention. At 3 months, Yustyna underwent brain surgery – and only after nearly four difficult months in hospital did she finally come home.

Shortly after, examinations revealed a rare genetic condition – centronuclear myopathy. There is no treatment. Her muscles will remain weak, and every movement will cost her tremendous effort. War added to everything else: the family from Zaporizhzhia first relocated to Dnipro, and then to Kyiv.

Yustyna is now 2 years old. She still cannot hold her head up, roll over, sit, or walk. She has additionally been diagnosed with chest deformity, hip dysplasia, apnea-hypopnea syndrome, dysarthric disorders, and developmental delay. That is why systematic rehabilitation is recommended for the girl – only this can strengthen her muscles and give her the chance to develop.

"After treatment, Yustyna becomes more confident in her movements, work with a speech therapist helps develop her speech, and thanks to an occupational therapist she is mastering everyday skills, developing fine motor skills, and becoming more independent," says the girl's mother.

Yustyna's family has been through their child's clinical death, brain surgery, a severe diagnosis, and the loss of their home. Despite all of this, her parents continue to fight for their daughter's future. And stopping now is not an option – rehabilitation must continue.

Please support Yustyna – let her keep fighting.