У моей дочери болезнь Ниманна-Пика: Нина | Быть мамой

Masha was born an ordinary baby. But just a month later, her parents began to notice something odd: she started spitting up milk, and after a blood test, Masha's finger wouldn't stop bleeding. They took her to the doctor, and from there, to intensive care. A month later, she was diagnosed with giant cell hepatitis. Her parents began monitoring her diet, and her health returned to normal. Then, at two and a half years old... Masha began falling while walking. Then she began rapidly losing skills: she stopped talking and walking. They began examining her and diagnosed her with a devastating diagnosis: Niemann-Pick disease. This is an inherited genetic disorder that disrupts lipid metabolism, causing lipids to accumulate in the cells of the liver, spleen, bone marrow, brain, and lungs. Now Masha doesn't walk or talk, and eats through a nasal tube. This is a very rare disease, affecting one in 150,000 people. It involves a gene mutation, and... the consequences are extremely severe. In recent months, Masha has been feeling better—with the help of charitable organizations, she was able to purchase the drug Miglustat, which makes her life a little easier. If you'd like to help Masha, we'll leave your details here: Contact:   / savemashalife   Nina Kirillovich: ✔️BPS Sberbank 4496 5501 2614 5173 02/21 ✔️Belarusbank Card 4255 1901 221 05862 10/23 ✔️BPS Bank 4496 5501 5134 2554 01/24 Charitable accounts at Belarusbank Nina Kirillovich ✔️In Belarusian rubles BY74 AKBB 3134 0000 0042 7007 0000 ✔️In Russian rubles Rubles BY21 AKBB 3134 3000 0019 4007 0000 ✔️In Euros BY48 AKBB 3134 2000 0021 5007 0000 ✔️In US Dollars BY67 AKBB 3134 1000 0024 3007 0000 My daughter has Niemann-Pick disease: Nina | Being a Mom ➞    • У моей дочери болезнь Ниманна-Пика: Нина |...   New videos every day – subscribe! ➞ http://bit.ly/Subscribe_TUTBY​​​​​ ============================================== If you like the video, don't forget to like and subscribe to the channel to help it spread. Thank you!