Escaping Ukraine: Saving my Child with a Rare Disease
When the war in Ukraine began in 2022, people around the world quickly became aware of the challenges civilians in the warzone would face. The global community began supporting us by sending food, water, clothing and other supplies. Like many people living in the Kyiv area, it felt like my family's daily life came to a grinding halt as our town became a warzone.
But unlike most families, my husband and I also had to consider our son, Andryusha's GRIN2B disorder diagnosis. The war made it nearly impossible to get him the care and resources he needed. During the months that followed the occupation of Kyiv, the global GRIN2B community amazed us with their unwavering support and dedication to keeping our family safe.
The Completion of a Diagnostic Odyssey Doesn't Always Bring Answers to Questions
My husband and I were overjoyed when we learned I was pregnant with Andryusha. During my pregnancy, I was very careful about staying healthy and following my doctors' instructions. When our son was born in 2011, he looked perfect and we were excited to bring him home so we could begin our lives as a family.
Andryusha was only about three months old when we began noticing that something might be wrong with his health. Other babies his age were starting to hold their heads up, build up their muscle strength and show interest in the world around them. On the other hand, Andryusha showed no interest in toys, ate poorly, barely slept, experienced obvious muscle weakness and could not hold his head up without support.
His doctor agreed that he was experiencing developmental delays, and when our son was six months old, he was sent to the hospital to receive a full set of examinations. We lost track of the amount of tests he underwent, and none of them provided us with answers.
During the years that followed, we did our best to care for Andryusha without knowing what he truly needed. Eventually, a new method of genetic testing known as Complete Exome Sequencing became available in Ukraine and we were able to access it. When our son was seven years old, he was finally diagnosed with GRIN2B disorder, a rare genetic condition.
The Harsh Reality—and Unknowns—of a Diagnosis
To say that Andryusha's official diagnosis inspired a whirlwind of emotions is an understatement. We learned that GRIN2B disorder is a neurological condition that is characterized by low muscle tone, seizures, and delays in speech and development. There are currently no approved treatments for the disease, so our only option was to help him engage in speech and physical therapies and provide him with nutritional and medical support to address his symptoms. While we felt relieved to have a name for what Andryusha was experiencing, we were frustrated at the lack of treatments available.
Perhaps the most difficult part of Andryusha's diagnosis was that he was the only child in Ukraine to have a GRIN2B disorder diagnosis. The condition's rarity meant that doctors in our home country were unfamiliar with it. We felt like nobody could answer our questions or help us understand the disease.
Like many parents of children with rare diseases, our biggest source of support in the days after Andryusha's diagnosis was the international GRIN2B disorder patient and caregiver community. We connected with the GRIN2B Foundation, a parent-run organization that provides support and education to families impacted by the condition.
We also began traveling internationally to meet with specialists who had more experience treating GRIN2B disorder and could provide us with more information about how we could best support our son. My husband and I made it our goal to do everything in our power to give Andryusha the care that he needed.
An Unthinkable War's Disruptions
It seems like as soon as we began to feel hopeful and settled in Andryusha's care plan and routine, our world was turned upside down. When the Russo-Ukrainian war began in 2022, our goal of providing our son with constant support and therapies began to feel like a titanic effort. Our ability to take him to numerous appointments including Montessori classes, acupuncture, speech, physical, equine and even dolphin therapies was taken away—just leaving our house became a challenge. It was no longer safe to go outside, bombs were being dropped from all directions, and the smell of gunpowder and ash consumed the air in our hometown of Kyiv.
We were relieved to receive an email from Liz Marfia-Ash, president and founder of the GRIN2B Foundation, asking if our family was safe and if there was anything we needed. Initially, we asked her to help us get the medication Andryusha needed, but it became clear that we would need her assistance with escaping Ukraine as the violence near our home intensified.
On March 17th, 2022, the efforts of the GRIN2B Foundation and GRIN Therapeutics came to a head when they were able to coordinate our family's transport from our home outside Kyiv to the Polish border.
They worked around the clock and never turned their backs on us during our temporary stay in Poland before moving to Barcelona. It was amazing to receive help from people I had never met before. Even though they were far away, we felt their confident support and knew that everything would be okay.
Building a New Life and Keeping Hope Alive
We finally settled in Barcelona in November 2022. Moving to a new country has come with its own challenges. Between learning a new language, adapting to a new culture, finding a new home and making sure our children are established, our plates are certainly full. However, for the first time, Andryusha has been able to go to school with another student diagnosed with GRIN2B disorder.
She is the first person we've met with the same condition. Andryusha has teachers, medical professionals and a community, all of whom can help us gain a better understanding of his condition. I feel optimistic that further research will allow for a deeper understanding of GRIN2B disorder, giving Andryusha access to a treatment someday.
I still think about and miss our lives in Ukraine, and I look forward to the day we can return home safely. I realize how lucky we are to have the support of a community that also wants to provide my husband and I with the resources we need to take care of our children. We get to watch our children thrive in ways that seemed impossible when bombs began falling in Ukraine.
To learn more about the Bilous family and how to support them during their time in Spain, visit here.
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