Ksusha Goreglad’s and Vanya Galaluk’s families are one of the first are among the first patients of the “Novoe Pokolenie” Foundation. We have been helping these children for man years: every month we buy bottle feeding and consumables for special technical equipment.
While Ksusha has spinal muscular atrophy¹, Vanya has Hallervorden–Spatz syndrome². Both genetic diseases are terminal, therefore providing palliative care is all “Novoe Pokolenie” can do.
In November the fund bought two electric hospital beds to support these two families. This user-friendly medical equipment is intended to care for the frail, seriously sick and bedridden patients. The beds ensure Vanya’s and Ksusha's comfortable position of the body in accordance with their health status, age, diagnosis and other factors.
¹ Spinal muscular atrophy (SMA) is a rare neuromuscular disorder that results in the loss of motor neurons and progressive muscle wasting. It is usually diagnosed in infancy or early childhood and if left untreated it is the most common genetic cause of infant death.сThe common feature is progressive weakness of voluntary muscles, with arm, leg and respiratory muscles being affected first. Associated problems may include poor head control, difficulties swallowing, scoliosis, and joint contractures..
² Hallervorden–Spatz syndrome is a genetic degenerative disease of the brain that can lead to parkinsonism, dystonia, dementia, and ultimately death. Neurodegeneration in PKAN is accompanied by an excess of iron that progressively builds up in the brain.