Said is a ward of the Butterfly Children Foundation. All because of epidermolysis bullosa (EB)– a rare genetic disease that makes a guy's skin so vulnerable that any touch can lead to injury.
His illness largely determines his life: he studies remotely, and even his favorite chess club has recently become unavailable to him for health reasons. EB affects not only the skin, but severe forms (and Said's is just that) also affect the mucous membranes. All this leads to a whole bunch of problems, so from time to time Said needs to be hospitalized, undergo a full examination and treat complications of the underlying disease.
There are not many medical institutions in Russia that can provide assistance to such difficult patients, one of them is the National Research Medical Center for Children's Health in Moscow, which has a department specializing in working with children with severe dermatological diagnoses. Hospitalization at the National Research Medical Center for Children's Health is carried out according to compulsory medical insurance, but the wards and their parents need to get to Moscow, and after discharge – home.
Hospitalization allows you to conduct a full examination, prevent the development of complications, and perform all necessary procedures, including necessary surgical interventions.
This is a chance for Said and the other "butterflies" to live a full life. Help raise funds for tickets to Moscow and back.
