Yustyna battles a rare disease

On the first day after her birth, Yustyna was transferred to intensive care – the girl could not breathe on her own, her muscles did not respond, and her nervous system was almost unresponsive. The fight for her life began.

The little girl spent her first months in the hospital. Justyna underwent complex procedures, including intubation, mechanical ventilation, hormone and antibiotic therapy, and spinal fluid testing. The tests followed one after another, revealing new problems. Due to muscle weakness, the girl could not eat on her own, so she was fed through a nasogastric tube for several months.

When Yustyna was less than a month old, her heart stopped at one point. Fortunately, the doctors restored her heart rhythm, giving Yustyna a second chance at life!

After that, new problems began to develop in the girl: internal hydrocephalus and an increase in head size led to the need for surgery. When Yustyna was 3 months old, she underwent brain surgery, after which she finally began to recover and, after almost four difficult months in the hospital, she finally returned home.

But that wasn't the end of her health problems: soon after, Yustina was rushed to hospital with suspected spinal muscular atrophy (SMA). After numerous tests, the diagnosis was not confirmed, but DNA results showed a rare genetic disease – centronuclear myopathy (CNM), for which there is currently no treatment. The girl's muscles will remain weak, every movement will cost her enormous effort, and medicine is currently powerless to change this.

Yustyna's family is originally from Zaporizhzhia, but due to the full-scale war, they were forced to move to Dnipro, and when they learned of the diagnosis, they moved to Kyiv.

Yustyna is now almost two years old, she cannot hold her head up, sit, crawl, or walk. She has been diagnosed with chest deformity, hip dysplasia, moderate apnea-hypopnea syndrome (breathing stops during sleep), dysarthric disorders, underweight, and developmental delay.

Doctors explain that the only way to help Yustina is through systematic comprehensive rehabilitation. Regular sessions with specialists can strengthen her muscles, improve her motor functions, and enable her to develop as much as her condition allows.

"Our family has gone through clinical death of a child, brain surgery, a difficult diagnosis, loss of home, and moving to another city. We continue to fight for our daughter's future, but we need support. Yustyna has already defeated death twice. She deserves the opportunity to live a full life as much as possible with her diagnosis," says the girl's mother, asking for support so that Yustyna can receive rehabilitation.