A Rare Relationship: Living with Rett Syndrome

“When she smiles, we forget about all our problems and challenges,” says Nazir Motala, father and caregiver to 25 year-old Tasneem. Tasneem has Rett syndrome, a rare progressive genetic neurological disorder caused by underproduction of an important brain protein. Over time, the disease takes a devastating toll: most people with Rett syndrome cannot speak, walk or use their hands.

When Tasneem was six months old, she started having seizures which caused brain damage and slowed her physical development. Nazir searched high and low for an explanation with few answers; “She went through lots of tests and we weren’t sure what was wrong,” he explains. The Hospital for Sick Children diagnosed her with Rett Syndrome at the age of 15 months. “At the time we didn’t want to accept it…especially her mother,” says Nazir.

Despite the demands of caring for their daughter for a quarter of a century, Nazir remains grateful and positive about his role. “It’s a lot of work, but my wife and I encourage each other. Tasneem is a gift that we need to care for,” says Nazir about his daughter.

The strong bond between the father- daughter duo is evident from Nazir’s stories, “Abbu, which means dad, is what Tasneem shouts out whenever she needs something…or when she’s in trouble,” he laughs.

Nazir takes charge of all Tasneem’s care—from baths, feeding, medication administration to taking her to day programs and doctor’s appointments. “I have never seen a father with a heart of gold like Mr. Motala,” says Jasmine Rexon, a PSW at VHA, who provides support for Tasneem during the week.

Nazir clearly relishes the opportunity to attend to his daughter’s need, despite his own health difficulties. “Nazir does all the heavy lifting and hides his pain from sciatica behind a smile,” says Jasmine. Being the knight in shining armor for his daughter comes easily to Nazir but he is aware of the challenges a caregiver’s life comes with. “You need to have support. We are lucky to have this through VHA,” he adds.

Tasneem has also formed a close relationship with Jasmine, her PSW which gives Nazir some personal time to go to the mosque or the gym. Keeping his life in balance is one of his secrets to being a good caregiver and providing for the needs of his family. “I just go with the flow,” says Nazir.

Learn more about Rett syndrome at http://www.rettsyndrome.org. For more information regarding services provided by VHA, call us at 416 489 2500.