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Marianna B.

A phoenix rising from the ashes.

For many of us, we watched the war in Ukraine through our screens, staring in disbelief at the images and videos projected back at us.

Marianna and her mom, Anna, lived through it.

The violence and destruction crept closer until the morning of June 27, 2023, when Russian missiles struck Marianna’s hometown, the busy city center of Kramatorsk, killing 13 people and injuring 61 others. A 17-year-old girl, a pair of 14-year-old twin sisters, and a US Marine Corps veteran were among those killed in the attack. 

Marianna’s home was destroyed, and the city that was once home to 150,000 Ukrainians was a shell of rubble and ruin.

As horrific as those events were on their own, the logistics of getting out of the city and to a safe environment were complicated by Marianna’s complex medical needs. 

“I was a happy child until the first symptoms of Spinal Muscular Atrophy (SMA) came into my life,” Marianna said. “I’m now 19 years old, and life has become a constant cycle of doctor visits. At the moment, I’m completely immobilized, but I’m hoping my motor function will progress and recover. But there is no cure.”

SMA is a genetic (inherited) neuromuscular disease that causes muscles to become weak and waste away. People with SMA lose a specific type of nerve cell in the spinal cord (called motor neurons) that control muscle movement. Without them, muscles don’t receive nerve signals that make them move. With SMA, certain muscles become smaller and weaker (atrophy) due to lack of use. There is no known cure.

So, as terrified citizens began fleeing the war-torn country, Marianna’s mom was scouring the internet to see if she could find a hospital in the United States that could take over care of her daughter. 

The family had friends living in California and were thrilled when a hospital in San Diego agreed to treat Marianna. They successfully sourced their immigration visas, packed a few belongings, and left their home country for the possibility of a brighter future.

“Even before the war, the infrastructure in Ukraine was not made for those with disabilities,” Anna told us. “There was not much available to buy, and accessibility was a challenge. Doctors here weren’t very aware of SMA, either. We didn’t have many options for treatment but were searching for something that could help stabilize the condition - even calling on German and American doctors.

“We had to use our own money to buy most of the medical equipment or items we needed,” she continued. “At her school, we had to help build a wheelchair ramp just so Marianna could continue to attend.”

It’s been a huge change relocating to the U.S., and they still worry for friends and family members who haven’t left Ukraine. But they try to keep their eyes set on what’s going well and all they have to be thankful for. 

Marianna is receiving innovative therapy in Southern California and also managing to attend full-time college classes. She’s loved art and drawing for as long as she can remember, and graphic design became a hobby for her in the last few years. She’s hoping to turn that love into a career and is studying to get her degree, despite her language barrier.

They’re also finding a sense of community here, so when her doctor learned about her ongoing mobility challenges in her apartment, they suggested reaching out to Chive Charities to see if we might be able to cover the cost of a lift for them. 

For someone who lost so much and still continues to find a way to move forward, we knew we had to step in.

Marianna needed a motorized lift to help move her from her bed to her wheelchair and other areas around her home, and she also hoped for a Motomed trainer that would allow her to move and exercise her arms and legs, hopefully limiting any further muscle deterioration or atrophy and complementing her treatment. That seemed like a wish we could easily grant. All in all, the impact was $15,230.

It’s hard enough to handle the challenges a rare medical condition can pose, let alone the fear and anxiety of foreign attacks or war. Marianna has shouldered all of it. But instead of lamenting what she lost or no longer has, she continues to look for the good around her - for the possibilities.

Thanks to the support of donors like you, she can focus less on how to navigate the limitations of her apartment or her own body and instead turn to her mom, her artwork, and her storytelling. She can focus on continuing to build a beautiful life in her new home. Like a phoenix rising from the ashes, Marianna is bravely taking on this new path ahead of her. Thank you to all of you who were part of it. Join our movement and help us find more phoenixes waiting to take flight. DONATE HERE.

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