When Michael and Anita Sequeira’s daughter was born in India in 2001, doctors didn’t offer much hope. Malaika has spina bifida, a congenital malformation in which the tube of tissue that forms the spine does not close. Surgeons closed the spinal defect, but with little control over her lower body, the doctors said she would never walk.
It was not until the family moved to Mississauga in 2010 that Malaika had surgery on her lower legs to help her walk. She was referred to ErinoakKids, where she received physiotherapy and occupational therapy once she recovered from surgery.
During her recovery, ErinoakKids helped the family obtain support from the Ministry of Children and Youth Services’ Special Services At Home (SSAH) program. The program helps families caring for a child with a disability pay for services and supports not available in the community.
“Now she can do more,” Anita says. “She gets yoga instruction at home, and we get private swimming for her because she cannot swim with the other kids. ErinoakKids also made sure Malaika gets help with catheterization at school, for her incontinence, a common problem for people with spina bifida. We get a lot of help and we are so grateful.”
Much of that help was organized by an ErinoakKids Service Navigator, a professional who helps families needing multiple services find the right ones at ErinoakKids and in the community.
The Service Navigator helped Malaika’s family complete the SSAH application, and gain access to Peel’s TransHelp service, which provides accessible buses for people who have mobility challenges that prevent them from using public transit.
Thanks to her entire ErinoakKids team, Malaika, now 13, walks at home without a walker, although she frequently uses one outside the home. She also attends ErinoakKids Recreational Therapy Programs, where Recreational Therapist Marisa Leung deftly adapts activities to her.
“When Malaika does Bollywood dancing, I keep her walker in front of her so if she feels off balance she can hang onto it,” says Marisa. “We also spend time in the gym. Going to a regular gym was not something she thought she could do, but I found she liked using certain cardio equipment, and that was a key motivator. Now she enjoys the gym and has increased her strength, range of motion and endurance.”
Today Malaika is making good progress with the support of her family and her ErinoakKids care team.
While she still has a journey ahead of her, the formerly shy girl who once relied on her parents has gained confidence and independence.
“I used to sleep in my parents room in case I needed help at night. Now, if I need help I know it’s only a few steps away and I can get there on my own.”