How a mother in the US helped a boy suffering from the same rare disease as her daughter escape from Ukraine

When Russia invaded Ukraine in February 2022, Nadia Bilous and her family went into a basement near kyiv to protect themselves from artillery fire and bombs. As more families took shelter with them, Bilous’s son Andryusha, then 10 years old, began to see his health deteriorate.

Andryusha has a rare disease called neurodevelopmental disorder related to the GRIN2B gene, which causes developmental delays, intellectual disability, and seizures, among other symptoms. The condition belongs to the group of genetic disorders that affect genes called GRIN and has no cure.

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Through a clinical trial before the war, Andryusha had been taking medication and receiving therapies that helped him move forward. But the ongoing conflict prevented him from receiving important treatments, and Bilous became concerned about his son’s health. Her husband was defending the city and she wanted to stay and fight for her home. Still, Andryusha needed care.

“I can’t even explain to you how horrible everything was,” Bilous, 36, who now lives in Barcelona, ​​told .com. “It was very stressful for him and his condition was really bad.”

But an email from a mother in the United States changed the situation for Andryusha and her family. Liz Marfia-Ash messaged the Bilous family to ask if they needed help. Finally, they asked if Marfia-Ash could help them flee to another country so Andryusha could receive medical care. Immediately, Marfia-Ash agreed to help.

“There was no turning back,” the American mother told .com. “It gave me the motivation to say, ‘Okay, obviously I can’t help everyone, but at least I can do something for this family.’”

Sick during an invasion

In the basement near kyiv, Bilous worried about his loved ones while dealing with his son’s deteriorating health and the ongoing war.

“There was no way to know if all of our close people were… alive,” he said. “To contact our relatives I had to go out, and when I was there, I always heard the sound of bombs, and the smell of gunpowder and ash falling from the sky.”

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Every day, Bilous faced new tensions. The Russians were advancing and she was struggling to find basic necessities such as water and electricity. “The Russians were getting closer,” she said. “The hospitals were not working… food, not even electricity, we had nothing.”

While worrying about what would happen if the Russians caught up with them, Bilous endured Andryusha’s care. Before the invasion, his health seemed stable thanks to medications and various therapies. But maintaining that attention was impossible in a small basement with no water or electricity.

“We didn’t have enough medicine,” Bilous said. “We didn’t have water to bathe Andryusha. “We didn’t have many things.”

Andryusha cannot speak and, like other children with conditions related to the GRIN2B gene, sometimes exhibits traits similar to autism spectrum disorder. As her stress increased, her mental health worsened. Bilous couldn’t even feed Andryusha without electricity.

“He can’t eat… so he used to make smoothies,” Bilous explained. “He has panic attacks when darkness comes and he hears the bombings.”

A friendly arm from the other side of the world

In the United States, Marfia-Ash felt helpless as he witnessed the Russian invasion of Ukraine in February 2022.

He created the GRIN2B Foundation after his own daughter was diagnosed with the disease in 2014. At the time, little was known about it and he could only find a few documents on the condition. Marfia-Ash was hoping to meet other families with children and share what they know.

“There was no support system,” she said of her daughter’s diagnosis. “There was no website with information. Nobody could give me a pamphlet that said, “This is what GRIN2B means.”

Since then, ha connected with 550 families around the world. With her foundation, Marfia-Ash funds research and supports families who have children with conditions related to the GRIN2B gene. There is a contact database, and that’s how Marfia-Ash met the Bilous family. She immediately sent them an email at the beginning of the invasion.

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First, Bilous asked if Marfia-Ash could help maintain Andyrusha’s treatment. The medication she takes treats some of her symptoms and not using it would likely affect Andryusha’s quality of life.

The boy had been taking the medication during a clinical trial, so he was receiving much more than the standard of care for his condition, thanks to his parents’ dedication. But that meant that his treatment regimen became even more difficult to maintain during the war.

“(Nadia) was very worried about getting the medication,” Marfia-Ash said. “That was the first obstacle we tried to overcome.”

Marfia-Ash began working with Hillary Savoie, whom she met because Savoie’s daughter was thought to have a disorder related to the GRIN2B gene (but she did not). Savoie works for GRIN Therapeutics, which seeks to develop treatments for disorders related to that gene and has a clinical trial underway.

Without the medication, “they certainly saw a decline in their well-being,” Savoie said. “I don’t think he was in imminent danger of hospitalization, but he was certainly getting worse and at incredible risk.”

And if Andryusha had experienced a medical emergency, he may not have been able to receive treatment.

“We also watched the news about what was happening in the hospitals,” Savoie said. “If something had happened, we knew he wouldn’t be able to receive support.”

Departure to Poland

Bilous asked for help creating a GoFundMe page to help feed his family and others sheltering in the basement. Savoie and Marfia-Ash were happy to help, as they tried to sort out the logistics of getting the family out of Ukraine.

“We were really eager to get them out as soon as possible,” Marfia-Ash said. “At first she (her mother) was very reluctant to leave, because she had taken in more people to her basement.”

Savoie started working with security services provider Global Guardian to remove the family from Ukraine and transport them to Poland. At first it seemed that Global Guardian It could take about two weeks to arrive in kyiv. Savoie and Marfia-Ash suspected that the Bilous family would face a “tipping point” where they would want to leave, so the duo continued to prepare to be ready when the family was.

“We were in contact the whole time,” Savoie said.

There were three bridges that the Bilous family could use to get out. After two exploded in early March, the situation became more serious and Bilous realized he needed to flee with his children.

“There was a temporary ceasefire,” Savoie said. “That was the only chance they had to get out. They had to leave precisely when they did. Otherwise, (they would have been) trapped.”

Marfia-Ash and Savoie contacted Global Guardian, who arranged transportation in a van. While it is normally a six-hour drive to the Polish border, Global Guardian expected the journey could take up to two days. They left early in the morning on March 17, 2022 and took about 13 hours to arrive in Krakow, Poland.

“I can’t say enough about Global Guardian,” Savoie said. “They arranged for this family to be driven (across the border). “There was a wheelchair waiting for him… It took 26 minutes until they were processed, and then they were met on the other side and taken to Krakow by another team.”

From Poland to Spain

After the Bilous family arrived in Krakow at a refugee hotel on the night of March 17, 2022, another family with a child with the same GRIN1 gene condition in Poland helped the Bilous family settle in. Then they would go to Barcelona, ​​where there is a research center dedicated to these disorders.

In Poland it was easy to see how much Andryusha had deteriorated.

“Lost weight. She slept very badly and self-harmed a lot,” says Bilous. “We shared this fear within us. She wasn’t eating well. He was not sleeping.”

As time went by, Andryusha, now 12, began to feel better, sleep more, and eat regularly. Still, he was “pretty hard on them,” her mother remembers. After a few months, they traveled to Barcelona, ​​which ended up being a “much easier” trip, Bilous said.

Since settling there more than a year ago, Andryusha has been transformed. “His condition is much better. He now he goes to school,” Bilous said. “She is eating.”

Bilous is grateful for the help her family received when leaving Ukraine.

“You should never give up. You have to fight for your family, for your country and for humanity,” she stated. “No matter how difficult the situation is, you should never turn your back on people. “What Hillary and Liz (did)… that’s what helped us.”