LVIV, Ukraine—On a recent October morning, Karina Pietoian and Yuriy Galyulko sat down to discuss their son, Eldar, and the mysterious illness that has come to dominate their family.
Eldar, 7, has Duchenne muscular dystrophy (DMD). But for the first 3 years of his life, nobody figured that out.
“Doctors didn’t know what Eldar had,” Pietoian said as she served hot tea and cookies in the living room of their small apartment. “By the time he was a year and a half old, he was very weak and couldn’t hold things in his hand. I understood that something was wrong with my son, but the doctors all got it wrong. Some even wanted to treat him for autism or intellectual disability.”
Pietoian, interviewed through an interpreter, is 38. Galyulko, a social worker, is 37. Along with Eldar and 2-year-old Margarita, they live on the third floor of a 19th-century brick building in Lviv, a medieval city in extreme western Ukraine, near the Polish border.
“I began asking doctors, but they didn’t know about the disease. Then I started finding out information online from other countries,” she said. “But here in Ukraine, if you ask somebody what Duchenne is, they might tell you it’s some kind of dessert. Unfortunately, there is no program for helping such people, so if you’re sick with this disease, you’re alone.”
The Ukrainian city of Kropyvnytskyi, a 10-hour drive east of Lviv, is home to Margarita Yashchenko and her husband Serhyi. Their son Danya, 14, was diagnosed with DMD at the age of 6 and has since gotten progressively worse.
“My son could walk until he was 13, but last year he fell on the floor and broke some bones,” she said. “He uses a wheelchair now because he cannot walk much anymore without resting.”
Danya’s older sister, Alina, heads Duchenne Ukraine, a nonprofit organization that connects DMD patients across this Texas-sized country, which is Europe’s second-largest in geographical area and population, but its poorest in terms of annual per-capita income. The country has faced years of mismanagement and corruption, the COVID-19 pandemic, and a violent separatist movement that has systematically destroyed the national economy.
As of 2018, Duchenne Ukraine had 444 patients in its registry, though the country’s actual number of people with DMD is now believed to exceed 500—and may, in fact, be closer to 600.
A regional conference organized by Duchenne Ukraine for November 22-26, 2021, in Kropyvnytskyi is expected to attract 15 doctors from throughout the country. In addition, Michel Toussaint, PhD, a Belgian neurologist affiliated with the Inkendaal Rehabilitation Hospital near Brussels, will distribute 12 ventilators to DMD patients and lecture on the importance of nocturnal and full-time home ventilation in treating Duchenne.
“Neurologists have more information and are better educated about this disease than in the past,” Margarita Yashchenko said. “For example, steroids are good for stopping the progression of Duchenne, but they have a lot of bad side effects, such as osteoporosis. We are working with a multidisciplinary team in Ukraine that includes pulmonologists, cardiologists, and orthopedic surgeons, and we also have a YouTube channel that’s a great training resource for doctors in our country.”
Lviv alone is home to 91 boys with DMD, including Eldar, whose biological father abandoned the family upon learning of his son’s diagnosis and soon after died of a heart attack.
“He left me with my son and didn’t help at all with money or support,” Pietoian said. Galyulko, at her side, quickly added: “At that time, Karina was deeply depressed because of Eldar’s situation. I saw all this and understood that I had to help her because I loved her, and this was her son.”
Galyulko, a social worker and Pietoian’s colleague for 12 years, eventually married her and formally adopted Eldar. Pietoian, meanwhile, formed a charity whose name loosely translates to “Eldar With Hope in the Heart.” Its Facebook group now has about 1800 members.
“Our organization unites families of children with Duchenne, and organizes various events and initiatives for doctors, government officials, and the media to raise awareness about this disease,” she said. “We fight for the rights of Duchenne patients to access expensive drugs, medical equipment, and rehabilitation programs.”
Olga Stefanyshyna, a deputy in the Ukrainian parliament, recently sponsored legislation to provide limited state funding for people with DMD; the organization has also enlisted the help of famous Ukrainian actors and singers to spread the message.
“In Ukraine, the government doesn’t help with anything. No money or medicine at all. But they do pay for physical therapy for 10 days a year, 30 minutes a day,” said Galyulko, whose left arm bears a tattoo inscribed “family above all” in English and Latin.
As her husband spoke, Pietoian carefully displayed all of Eldar’s medications on the kitchen counter and explained each one of them. Central to the boy’s daily regimen is deflazacort, a steroid that costs 20.60€ (about $24) per 5-day supply. Eldar also takes heart pills and a variety of vitamins purchased from US big-box outlets such as Costco and Wal-Mart.
“This family is very lucky because Karina’s mom is in Italy and Yuriy’s father lives in America,” said Iryna Hnativ, a visiting English tutor at the Lviv elementary school that Eldar attends. “But deflazacort here is not registered, and in Italy it’s much cheaper.”
Hnativ added: “Eldar doesn’t know in detail about Duchenne, but he’s a very clever child. He understands that something is wrong with him, because he can’t run as fast as his friends.”
In that regard, Galyulko has been helping the boy build up his strength, Pietoian said.
“When Yuriy came into this family four years ago, Eldar could only walk 20 or 30 steps. After that, he just wanted to be carried,” she said. “Doctors told me there wasn’t any treatment for Eldar, but Yuriy didn’t believe the doctors and told me not to listen to them. Every day, he helped Eldar with physical therapy, and after some time he became stronger. One day he walked 3 kilometers without stopping.”
Not long ago, Elder hiked all the way up Vysoky Zamok, a 413-meter hill just outside Lviv. He’s also going to a physical therapist 4 times a week, for several hours each day. In the summer, his parents take him to a local swimming pool for further exercise.
Recently, Eldar’s parents met with local officials including Lviv Mayor Andriy Sadovyj and the city’s deputy chief physician.
“We were heard and given a separate space in the Lviv City Children’s Clinical Hospital, where young patients and their parents can conveniently undergo the necessary examinations in one place,” Pietoian said. “Thanks to us, an effective program has been developed at a private rehabilitation center, where boys with Duchenne are currently getting therapy.”
In mid-2021, Galyulko and Pietoian met with the mayor of Lviv, Andriy Sadovyj, seeking funds for local patients with Duchenne. Following that meeting, the city donated some equipment to a local hospital that treats boys with DMD.
But it’s an uphill battle in the nation of 40 million people with an average per-capita income of only $2100 a year.
“We do the best we can for Eldar. We will do whatever we can for him, and also for children with other rare diseases,” Galyulko said. “But we are only 2 people and we don’t get any financial help. Without money, all our dreams for the future will remain just that—dreams.”