Okotoks, Alta., family faces limited options as two young children battle rare genetic disorder
A young Okotoks, Alta., family is preparing for a long year ahead, as the first of their two children begins a stem cell transplant they hope will prolong her life.
Stella, 4, and Max, 2, have a genetic metabolic disorder that 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 of the skeleton.
Up to 70 per cent of affected people are in a wheelchair by their teens.
Most will die between 30 and 40 years old.
Stella, a busy, outgoing four-year-old, will first go through a week of chemotherapy starting in early May, followed by a bone marrow stem cell transplant that could help her body begin to produce that critical enzyme on its own.
Mom Brittny Beet says the family is hopeful the treatment will improve her daughter’s quality of life in the years to come.
The family has set up a GoFundMe to help cover bills and travel for medical appointments.
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