Two-year-old Chetan, son of Manjunath from Davangere, who suffered from Gauchers’ disease, a type of lysosomal storage disorders (LSD), passed away on August 20 at Indira Gandhi Institute of Child Health.
Although Chetan was not among the 45 children eligible for free treatment for LSD, as per a Karnataka court directive issued to IGICH, his case highlights the urgency in providing treatment to children suffering from this debilitating diseases.
Three weeks after the government released Rs. 1 crore to IGICH as partial assistance to provide free treatment to children with LSDs in Karnataka, the parents of the children named in the court directive are still awaiting succour.
Lysosomal storage disorders, of which Gauchers’ disease is one type, are a type of genetic disorder which affects children early on. Without enzyme replacement therapy, many patients do not live beyond their late teens.
Tender called
Officials at IGICH said that the process to import the enzyme needed for enzyme replacement therapy is under way.
“We have called for a tender for procurement of the enzyme and hope to provide treatment in due course of time,” said Asha Benkappa, director, IGICH.
Doctors have contacted the families of children eligible for treatment and are preparing them for treatment, said Sanjeeva G.N., associate professor, IGICH.
