“Juggling Motherhood, a War, and a Child Diagnosed with GRIN2B Disorder”
Nadia Bilous is a native of Kyiv, Ukraine, she recently relocated to Barcelona with her husband and two children. Her oldest son, Andryusha was diagnosed with GRIN2B disorder at the age of seven.
She is passionate about sharing her family’s story to build awareness of the impact that GRIN2B has on the lives of patients and their families, as well as the effect that the war on Ukraine has had on those affected by rare diseases.
What was your life in Ukraine like before the war began?
My husband, two sons and I are originally from a town near Kyiv, Ukraine. My oldest son, Andryusha was diagnosed with a rare neurological condition called GRIN2B disorder, which is characterized by seizures, low muscle tone, difficulties with walking, talking and performing daily tasks. Before March 2022, my husband and I spent much of our time focused on taking Andryusha to different types of therapy. We were busy raising our sons but we were used to Andryusha’s care plan and routine. We travelled to numerous specialists and our days were filled with speech, physical, equine, and even dolphin therapies.
Can you explain Andryusha’s diagnosis and how GRIN2B disorder affected your family before the war?
Andryusha seemed healthy when he was born in 2011 and my husband and I were thrilled to begin our lives as parents. However, we realized something was wrong with Andryusha’s health when he was three months old. While other babies his age were able to hold their heads up, build their muscle strength and react to the world around them, Andryusha wasn’t meeting those milestones. Despite our efforts, he showed no interest in toys, ate poorly and barely slept. At six months old, he was sent to the hospital to receive a full set of examinations. After countless tests, we were left without a diagnosis.
When Andryusha was seven years old, a new method of testing called Genetic Exome Sequencing became available in Ukraine. It finally solved the mystery of our son’s symptoms by officially diagnosing him with GRIN2B disorder.
My husband and I have long accepted that we would have to fight for our son’s happiness and health. We knew taking care of him would be an uphill battle because we never heard of the condition he was diagnosed with. In fact, it seemed like nobody we knew heard of it, including many of his doctors. Given that Andryusha was the only child in Ukraine diagnosed with GRIN2B disorder, his medical team couldn’t tell us much about the disease. Through our research, we eventually learned more about GRIN2B disorder and discovered that there are no approved treatments for the disease. Our best option was to enroll him in speech and physical therapies and provide him with nutritional and medical support to address his symptoms. In 2018, we received a recommendation to meet with a doctor in Barcelona that specializes in rare diseases. During our meeting with her, she was able to teach us more about the GRIN2B mutation and recommend supportive therapies that might help our son. Meeting with her made us feel more optimistic about supporting Andryusha and gave us hope for a future where a treatment might become available to him.
How did you decide you needed to leave Ukraine after the war began?
When the Russian-Ukrainian war began in 2022, it felt like our lives in Kyiv were erased. We heard bombs falling outside our house and the air smelled of gunpowder and ash. We could no longer leave our home, which meant we couldn’t help Andryusha make any additional progress. Andryusha’s medications, which we usually ordered from other countries, were no longer accessible because Ukraine’s mail delivery service was disrupted. We also had problems making his meals because of frequent electricity outages. We were relieved when members of the international GRIN2B community, including Liz Marfia Ash, president and founder of the GRIN2B Foundation and Hillary Savoie from GRIN Therapeutics, reached out to offer us help. At first, we were hesitant to leave Ukraine, but my husband and I eventually realized that the best way to fight for our family’s safety was to leave our home and go to Poland. We were thankful that members of the GRIN2B community worked day and night to ensure that we made it across the Ukrainian-Polish border. While I had never met the people who were helping us, I could feel their support. We felt confident that everything would be okay.
How has your family been since leaving Ukraine?
In November 2022, thanks to the international GRIN2B community’s help, we were able to settle in Barcelona. Adjusting to a new language and culture is challenging, but for the first time, Andryusha has been able to go to school with another student diagnosed with GRIN2B disorder. It’s the first time we’ve met somebody with the same condition. Andryusha has teachers, medical professionals and a community, all of whom understand his condition.
We have been on an incredibly difficult road over the past two years. Our two goals were to survive the war and not lose a minute of Andryusha’s progress. We are thankful to be part of a community that has provided us with the support we needed to achieve those goals.
Despite the challenges our family has faced, we remain hopeful that there are better times ahead for us. Not a moment goes by where I don’t think about the people who were able to bring our family to safety. I look forward to the day that we can safely return home to Ukraine and I am encouraged by the important research taking place that will hopefully provide Andryusha with access to a treatment for GRIN2B during his lifetime.
To learn more about the Bilous family and how to support them during their time in Spain, visit: https://www.gofundme.com/f/ongoing-support-for-ukrainian-grin2b-family
