Ascension Parish family brings awareness to mitochondrial disease
Two landmarks in Baton Rouge have been set to light up green Sept. 18-24 for Mitochondrial Disease Awareness Week, which has been a special time for a family from Ascension Parish.
Tucker Dupre, the 2-year-old son of Donaldsonville natives Kandis Turner Dupre and John Dupre, was diagnosed with an extremely rare form of mitochondrial disease known as POLG, short of polymerase gamma. After having seizures when he was 18 months old, he was diagnosed with the genetic disease a short time later.
Last September, his constant seizures for eight days caused a stroke. Tucker was transported by air from Our Lady of the Lake Children's Hospital in Baton Rouge to Texas Children's Hospital in Houston. Later, he was transferred to Children's Hospital in New Orleans, where he stayed 67 consecutive days.
Tucker, along with another child from Louisiana who is under 8 years old, has been participating in a clinical trial in Montreal, Quebec. They fly to Canada six times a year to receive medication that doctors hope will treat the disease.
A total of 10 children from around the world are participating in the trial at Montreal Children's Hospital. Four are from the United States, three from Canada, two from South America, and one from Australia.
After starting as a six-month trial, it has been extended to a year for the second phase as the ten participants are showing progress with little to no side effects.
As both of the Baton Rouge area children have been hospitalized multiple times in the past two years, the lighting up in green in their honor is incredibly special.
The Governor's Mansion and Our Lady of the Lake Children's Hospital were both scheduled to light in green Sept. 24, and possibly the rest of the week. This is the second year in a row the Governor's Mansion has done so.
Mitochondrial disease affects 1 in 5,000 people. Mitochondria are the "powerhouses" of the cell, and they provide energy to every cell in your body. When mitochondria fail, organ failure begins.
People with mitochondrial disease can have seizures and lose physical abilities such as walking and fine motor skills.
Such disease has roughly the same survival rate as cancer, except that it has no treatments or cures.