Desperate Steinbach family awaits provincial drug approval to slow young son’s fatal disease

Five-year-old Leo Dupont’s health deteriorates a little bit each day, and his family is pleading with the province to approve a drug he needs to slow his fatal disease.

Leo, who lives in Steinbach with his parents and two older siblings, was diagnosed with Niemann-Pick disease type C in June. It is a rare neurological disease — only one in 150,000 people are diagnosed with it annually.

The Mayo Clinic’s website says the genetic disease involves the body not having the protein it needs to process cholesterol properly. The resulting buildup of cholesterol in the body’s cells leads to cognitive problems, as well as difficulty walking, swallowing and hearing, and ultimately results in death, usually by age 13.

There are two drugs that can slow the disease’s progression — Miglustat and Miply