Achi news desk-
A young family from Okotoks, Alta., is preparing for a long year ahead, as the first of their two children begins a stem cell transplant that they hope will extend her life.
Stella, 4, and Max, 2, have a genetic metabolic disorder which affects as few as one in 300,000 children.
With Morquio syndrome, the body does not produce an enzyme needed to clear waste sugars from the system, which leads to progressive deformities in the skeleton.
Up to 70 per cent of people affected are in a wheelchair by their teenage years.
Most will die between the ages of 30 and 40.
Stella, a busy four-year-old who leaves, will undergo a week of chemotherapy for the first time in early May, followed by a bone marrow stem cell transplant which could help her body start producing that critical enzyme alone.
Brittny Beet’s mother says the family is hopeful that the treatment will improve her daughter’s quality of life in the years to come.
The family has set up a GoFundMe to help pay bills and travel for medical appointments.
