Rare disease kids suffer most in Russia’s war on Ukraine

A young woman with type 2 Spinal Muscular Atrophy (SMA) huddles in a bare concrete basement in Kharkiv as Ukraine’s second-largest city, located only 35 kilometers from the Russian border, girds for another missile attack.

“Our entire building is vibrating from the explosions,” her father, Vitaliy Matyushenko, texted me last night via WhatsApp from Kharkiv, scene of some of the fiercest fighting since Russian President Vladimir Putin attacked Ukraine on Feb. 24 launching Europe’s most devastating land war in generations.

Yuliya is one of an estimated two million Ukrainians with rare diseases ranging from cystic fibrosis to pulmonary hypertension who are now trapped by bitter street battles across this country of 44 million. Meanwhile, Yuliya has only one week’s supply left of risdiplam (Evrysdi®), a liquid taken once a day by mouth or feeding tube.

“A tragedy is unfolding before our eyes, a tragedy that disproportionately affects people living with rare diseases,” Rucinski told me. “It’s not only personal safety that’s in jeopardy. People can no longer rely on electricity, heating, water and access to therapies. Bomb shelters in Ukraine are not wheelchair-accessible, nor are backup generators installed there.”

Rucinski said he’s been in contact with dozens of families whose children have SMA, yet the needs are overwhelming.

“These wheelchair-dependent children are spending days and nights in cellars, in winter cold, with no access to daylight, among the sound of explosions,” he said. “I can’t imagine the toll the war will have on them—physically, emotionally and psychologically.”

“Many families with disabled children are moving to the central part of the country as well as the west. But there are lots of families with kids who can’t leave and have stayed in their houses. Every hour the situation is changing, and we are all in danger,” said Yashchenko. “Children with Duchenne are at a big risk because they’re in wheelchairs and are unable to move quickly downstairs to safe places.”