У моего сына синдром Опица-Каведжиа: Наталия | Быть мамой

Opitz-Kaveggia syndrome is an extremely rare inherited genetic disorder that causes delayed growth and mental retardation, severe muscle hypotonia, strabismus, craniofacial and skeletal abnormalities, and epileptic seizures. Unfortunately, there is no cure; symptoms can only be managed. The disease is caused by a mutation in a single gene. Natalia's son, Vova, suffers from this terrifying condition. He will soon turn 17, but he looks 10 and has the mental development of a 4-year-old. For the first year and a half of his life, Vova simply lay there, interacting virtually with the outside world. Over time, he began to walk and attempt to communicate with others. Vova's favorite toy is a small mirror, which he almost always wears around his neck. Through it, he views the world around him. This is the story of a family that has faced a difficult trial, but which has not broken them. To contact Natalia:   / nataliia.komarenko     / z.teplom.u   is a link to the organization where Natalia works. They help over a thousand families with sick children. If you'd like to help, here are the details: CHF "With Warmth in the Heart" EDRPOU Code 39656109 Current Account UA263206490000026007052635849 in PRIVATBANK, Kyiv Or by key card number 5169 3305 1636 7593 Recipient: Director Natalia Vladimirovna Komarenko. Register Number 10721020000031874 of the Main Department of Justice in Kyiv, non-profit code 0036. My son has Opitz-Kaveggia syndrome: Natalia | Being a Mom ➞    • У моего сына синдром Опица-Каведжиа: Натал...   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, this will help it spread. Thank you!