Supporting Ukrainians living with Rare Diseases

Dear friends,

We are truly grateful to share some important updates about one of our adult patients who continues to fight every day, and whose family continues to love and care for him with all their heart.

Andrii is a 24-year-old man from Kyiv, one of the very few adults in Ukraine living with a rare disease called mucopolysaccharidosis type III (MPS III), also known as Sanfilippo syndrome. This is a progressive and life-limiting genetic condition in which harmful substances accumulate in the body and destroy brain cells. It gradually takes away a person's ability to speak, move, eat, and eventually breathe. Unfortunately, there is still no treatment to stop the progression of this disease.

Andrii requires continuous, around-the-clock care. After his mother passed away, his father became his sole caregiver, taking care of his son 24/7 without support, rest, or respite.

Thanks to charitable support, our foundation was able to provide a 3-month supply of medical nutritional formulas. These specialized formulas are essential to keep Andrii nourished and maintain his strength, especially when his body is no longer able to absorb regular food.

In addition, we purchased a new portable suction device (aspirartor) with a built-in battery. This equipment is critical for Andrii’s survival, as it helps clear his airways from saliva and mucus. His previous device had broken down. Without it, he simply could not breathe safely.
What makes this new aspirator especially important is that it can function during power outages - a reality many Ukrainians face due to regular attacks on the country's energy infrastructure during the war. This battery-powered device provides life-saving support when electricity is not available, making it a vital part of Andrii’s daily care.

Because of his father’s tireless care and the compassion of generous people like you, Andrii can continue to live with dignity.

We extend our heartfelt thanks to GlobalGiving and to each of our donors. Your support allows us to respond to urgent needs and protect the lives of people living with rare diseases, even in times of war.

With deep gratitude,
The Orphanni Synytsi Foundation team

Links:

• Andrii`s story