Community support leads to quick action on rare medication for Manitoba boy

The parents of a five-year-old Manitoba boy with a rare terminal illness say they credit the community for stepping up in their efforts to get him medication to improve his quality of life.

Kalya Krentz Dupont and Mario Dupont told Global Winnipeg that their life was upended when their son, Leo, was diagnosed with Niemann-Pick disease type C, a rare — and ultimately fatal — progressive neurological illness.

Krentz Dupont said when Leo was two, he began showing signs of a distended belly, combined with vomiting. Despite seeing a general practitioner followed by a number of specialists, the parents weren’t given any conclusive diagnosis, only speculation as to what might be happening with their son.

“We still saw the distended belly as the years went on, but we had a number of specialists