Khadija, Sara & Muhammad Abdullah Saskatoon, SK
Several years ago, Muhammad and Shazia started noticing that three of their five children were having some trouble hearing. Their eldest daughter and youngest son seemed fine, but their middle three—son Muhammad Abdullah and daughters Khadija and Sara—were exhibiting strangely similar issues.
“We noticed when they each turned four or five years old. We went to the specialist and came to know they had hearing loss,” says Muhammad. “But all of a sudden they started having more complications like skeletal disorders, some breathing and eyesight issues, and their physical growth stopped.”
In 2012, the family received a diagnosis: Muhammad Abdullah, Khadija, and Sara all had Morquio syndrome. It’s a rare inherited birth defect that occurs in about one out of every 200,000 births, part of a disease group called mucopolysaccharidosis (MPS). Symptoms of Morquio syndrome, or MPS IV, are far-ranging and can affect everything from the spine to eyesight to vital organs like the liver and heart. In Muhammad’s children’s case, they have difficulty breathing; their growth is stunted and joints twisted; and their eyesight and hearing are damaged. Two of the kids are in wheelchairs.
Scariest of all, Morquio syndrome is a progressive illness, meaning the symptoms get worse as the children get older. There is no known cure.
“Unfortunately this is a very threatening disease,” says Muhammad. “Morquio patients’ brains are not affected, but every other part of the body is affected. My children are pretty small in size. Although they are now 10, 12, and 14 years old, they look like they’re two or three years old."
“By taking the Hope Air flights, we can better manage the affairs of our other children."
Muhammad’s children began seeing numerous specialists to undergo treatment for their conditions. The appointments were so frequent that Muhammad and Shazia decided to move the entire family from their Regina home to Saskatoon, to be closer to the city’s Royal University Hospital.
The only treatment still difficult to reach is the sleep study at the Alberta Children’s Hospital in Calgary—a seven-hour drive away. Since Morquio syndrome affects their ability to breathe regularly, the children use BiPAP machines to sleep and must be monitored by specialists. Appointments are usually once a year per child, meaning Muhammad and Shazia still have to make multiple trips a year for this vital treatment.
Travelling to the appointments used to disrupt the whole family’s schedule. Because of the effort needed to care for five young children at the same time, all seven family members would end up travelling together by car to one child’s appointment. All of the children would miss school, and overnight accommodations would be expensive. The appointments were often scheduled during wintertime, making the seven-hour drive extremely dangerous.
Thankfully, a social worker told Muhammad and Shazia about Hope Air. Ever since then, they have been able to arrange quick, safe, and free travel whenever one of their children has to be at the Alberta Children’s Hospital. Arrangements are so much smoother flying that now Shazia can take the child with the appointment to Calgary, and Muhammad can stay home with the others.
“By taking the Hope Air flights, we can better manage the affairs of our other children,” says Muhammad. “Whenever we request, Hope Air provides transportation. I am very grateful for the support that is extended to us.”
Recently the family has found a bit of hope in the form of a new enzyme treatment recently approved in their province of Saskatchewan after months of anxious waiting. The medication can’t cure the illness, but it has the potential to slow or prevent its progression. Muhammad’s children have been receiving the treatment for over a year now, though a weekly infusion that takes five to six hours. They’ll have to continue doing so for the rest of their lives.
“The results are very positive,” says Muhammad. “The kids are at least not getting weaker. They cannot walk, but at least they can smile, they can eat food, they can see the world.”
Despite the daily difficulties they face, Muhammad says the three children love going to school and are eager to continue their studies.
“They don’t like to sit at home. Even if we have an appointment at a hospital in the morning, when they’re free to leave they want to go to school. They are pretty happy with their education, the teachers, the support staff,” Muhammad says.
“They get excited about kids’ parties and about cooking and baking. They like math—they take pens and paper and sit together at home and do some quizzes. They’re good at using computers, laptops, and iPads.”
And now, because of their Hope Air flights, Muhammad Abdullah, Khadija, and Sara have more time to spend on their hobbies – instead of taking multi-day, difficult drives to their Calgary appointments.
“Hope Air is always helping us,” says Muhammad. “That is so amazing, and we are so grateful. All the families I see on social media that [Hope Air] has helped—that is amazing.”