Unfortunately, the support system for children with progressive incurable diseases has not been fully built. Many seriously ill children end up in intensive care where their parents cannot see them. And the parents do not have money so that the child can return home and live there on mechanical ventilation.
Angelfond has a project to help families with terminally ill children in the regions. These families are provided with material, legal, psychological and consulting support.
Today in the regions under the care of the fund are about twenty children, including children diagnosed with SMA – spinal muscular atrophy. Children with the most severe form of SMA cannot walk, sit, and by the age of two, their pulmonary muscles fail, causing the child to stop breathing on their own. Other children in the care of the Foundation suffer from severe damage to the central nervous system, genetic diseases and the consequences of trauma.
Many of these children depend on ventilators – and still live at home with support from the foundation.
Since April 2020, we have raised over $ 20,000. Thanks to these funds, more than 11 terminally ill children from different parts of the world received targeted assistance, and hundreds of families received legal advice, which allows families to be independent and independently resolve issues of assistance to their children.
Shortly before the end of this collection, we decided to continue it and make it indefinite. Every month we will collect funds to provide special food and medical equipment for more than 30 terminally ill children in the regions, as well as funds that will go to the salaries of a consultant, psychologist and lawyer.
With money, you need to buy special high-calorie food, which is absorbed by the weakened body of the child and gives him the necessary energy for growth and development, as well as small and medium-sized medical equipment necessary to maintain the quality of life and alleviate the symptoms of the disease – aspirators (aspirators), pulse oximeters, humidifiers for ventilators and NIVL, masks, tonometers, etc.
In addition, families are accompanied by a whole team of specialists. Each family is assigned a coordinator from the fund, who is constantly in touch with their families, checks all medical data, doctors’ recommendations and test results, determines what supplies a particular child needs, and manages the purchase and transfer of everything the family needs. … The fund’s lawyer reviews all requests from families. Basically, they relate to obtaining free medicines from the state that are required by law for a family, conducting medical and social examinations and obtaining technical means of rehabilitation. If necessary, a psychologist is involved in work with the family.