Our fruitful partnership with the Palm of Hope Foundation @palmofhope
continues reaching more Ukrainian families with SMA kids in the war zone.
This month we managed to deliver portable ventilators to four kids with SMA type 1 in Khmelnytsky region. All 4 children had the early onset of SMA in the first weeks after birth, can't walk, eat and breathe unaided.
Thus, Bogdana Kivliuk @kivliukgalina
, 6 years old, had tracheostomy performed at the age of 14 months. Since that time, she doesn't breathe on her own, is always connected to the ventilator, and receives nutrition through a nasogastric tube.
Arianna Zabarna @innazabarna
, 3 years old, lost her ability to swallow and breathe even earlier when she was only 5 months. She received her first dose of Spinraza in 10 months, being already intubated.
Two other kids are currently receiving their long-awaited Risdiplam @rocheukraine @roche
through a charity program. Before that, Anastasia Vidiuk @nataliavidyk
, 9, spent nearly 2.5 years of her life in the intensive care unit and had a tracheostomy before she was 2. Zakhar Lopatinskiy @tany.kozyr, 4 years old, is also is a carrier of a gastrostomy, who can't sleep without non-invasive ventilation.
These families live in the constant fear of a sudden power outage and subsequent respiratory arrest, lack of medicines, and special nutrition for their kids. The new LUISA ventilator they received from us is a 3rd generation device for high flow oxygen therapy. It is battery-run, lightweight, and easy to use under any circumstances. It is life-saving, moreover, it is like a second birth to these children!
We express enormous gratitude to @palmofhope
, personally Karina Youseff, and Boergel GmbH in Germany for organizing communication and logistics.
Thank you to everyone involved in creating this opportunity to save SMA children threatened by war. We look forward to its end, as these kids have many plans and hopes ahead, and we are here to support them.