Olyushka and her parents
❤ Why am I "posting" videos of a sick child?
I'm posting these videos to raise awareness about the diagnosis of "thanatophoric dysplasia"/"thanatophoric dwarfism."
Google the internet and you'll see how little information is available about this disease, what a child with this diagnosis looks like, what they can do, how they grow, and how they develop.
In the Russian-speaking world, no one really knows anything about the development of children with "thanatophoric dysplasia," including doctors! This diagnosis is uncommon and is determined during pregnancy by ultrasound at 17-21 weeks.
I'm posting these videos for parents who are on the verge of despair when they learn they're expecting a sick child. With these videos, I want to show that a child's illness isn't the end of the world. That it's something you can live with. Difficulties are inevitable, as with any illness, but even with it, you can live with joy and gratitude. I'm posting these videos so people can be kinder to sick children and understand that these children live among us. They're not second-class citizens. They deserve to be on the air, too, and these children are beautiful too! Sometimes, they're even more beautiful than many "healthy" adults.
And the worst disability is a disability of the soul and spirit, not the body. This realization gives me the strength to invest as much as possible in the soul and spirit, even if it's impossible to change the body and genetics.
I'm posting these videos for everyone who is inspired by our example to love their children and loved ones simply for who they are! No matter how they were born or what they look like. And to appreciate every day of life as a great gift.❤