An Okotoks, Alta., family faces limited options as two young children battle a rare genetic disease

A young Okotoks, Alta., family is preparing for a long year ahead as the first of their two children begins a stem cell transplant that they hope will prolong his life.

Stella, 4, and Max, 2, have a genetic metabolic disorder that affects only one in 300,000 children.

In Morquio's syndrome, the body does not produce the enzyme necessary to clear residual sugars from the system, which leads to progressive deformation of ontogeny.

70% of the victims are teenagers.

Most die between the ages of 30 and 40.

Four-year-old Stella, busy and patient, will first undergo a week of chemotherapy starting in early May, followed by a transplant of bone marrow stem cells that will help her body produce this vital enzyme on its own.

Her mother, Brittney Beat, said the family hopes to improve her daughter's quality of life in the years to come.

The family has set up a GoFundMe to help pay bills and go to medical appointments.