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.
CTVNews.ca Top Stories
![](https://www.ctvnews.ca/polopoly_fs/1.6979388.1722030190!/httpImage/image.jpg_gen/derivatives/landscape_800/image.jpg)
BREAKING Celine Dion stages comeback with performance at Paris Olympics opening ceremony
Celine Dion staged the comeback of her career during the opening ceremony at the Olympic Games in Paris.
Paris Olympics kicks off with ambitious but rainy opening ceremony on the Seine River
Celebrating its reputation as a cradle of revolution, Paris kicked off its first Summer Olympics in a century on Friday with a rain-soaked, rule-breaking opening ceremony studded with stars and fantasy along the Seine River.
Jasper wildfire: 'Several weeks' before Jasper can return, premier says
Premier Danielle Smith said Friday afternoon in Hinton while weather conditions are cooler, the Jasper fire is still considered out of control and that Jasper residents can expect to be away from their homes "for several weeks."
Health Canada warns some naloxone kits contain false instructions
Health Canada is warning some take-home naloxone kits come with bad instructions that should be ignored in favour of the correct guidance.
'He was just gone': Police ramp up search for vulnerable 3-year-old boy in Mississauga, Ont.
Police in Mississauga are conducting a full-scale search of the city’s biggest park for a non-verbal toddler who went missing Thursday evening. Sgt. Jennifer Trimble told reporters Friday morning that there has been no trace of three-year-old Zaid Abdullah since 6:20 p.m., when he was last seen with his parents in Erindale Park, near Dundas Street West and Mississauga Road.
Driver charged after flashing high beams at approaching police
Orillia OPP arrested and charged a driver with impaired driving after flashing their high beams.
Irish museum pulls Sinead O'Connor waxwork after just one day due to backlash
An Irish museum will withdraw a waxwork of singer-songwriter Sinéad O’Connor just one day after installing it, following a backlash from her family and the public, it told CNN in a statement on Friday.
Turpel-Lafond won't sue CBC over Cree heritage report that took 'heavy toll': lawyer
The lawyer for a former judge whose claims to be Cree were questioned in a CBC investigation says his client is not considering legal action against the broadcaster after the Law Society of British Columbia this week backed her claims of Indigenous heritage.
Winnipeg senior's account overdrawn $146,000 for water bill
A Winnipeg senior is getting soaked with a six figure water bill.