Imagine being a new immigrant to Canada and not understanding how the health care system works. Imagine knowing that there is something wrong with your baby and you don’t know what it is. Imagine going to see doctor after doctor in Canada and abroad – travelling all the way to Indonesia – your home country – searching for answers to your child’s health condition and not getting one. Imagine having a child with a medical diagnosis that takes a long time to diagnosis. And, imagine after months and months of not knowing –finally receiving an answer – your child has Rett Syndrome and you don’t know where to turn.
One of the Community Care Access Patients is nine-year-old Gabrielle (Gabbie) who lives at home with her family in Mississauga. However, Gabbie is not a regular nine-year-old little girl. Gabbie has Rett Syndrome.
Rett Syndrome is a rare neurodevelopmental condition affecting mostly females; it stunts growth, affects speech and coordination, and is characterized by repetitive hand movements. Children with Rett Syndrome display normal development until six or 18 months of age, when delay or regression occurs, which is typically when children are diagnosed. While Rett Syndrome is not degenerative, all children and adults living with the condition need full-time assistance as they cannot stand, walk, feed, or toilet themselves. There is no cure
Going back nine years, Gabbie’s mother, Kusyati intuitively felt that Gabbie was not progressing, reaching the same childhood milestones in the same way her other two children had when they were her age; but she did not know what was wrong. Finally, the answer came in the form of Gabbie’s diagnosis – Rett Syndrome – and that is when Kusyati contacted the Mississauga Halton CCAC for looking for help
The Mississauga Halton CCAC supports families in care of infants, children or youth with complex medical and health care needs. Care coordinators such as Rashmi Tailor work with families to support development of the child, with their families maintaining the role of primary caregiver(s).
“I love to help the community with the knowledge that I have so I can support them in their family life to make their life easier or better in any way possible. I am there to help them with health care related decisions. I feel that you get the best gains when you are proactive vs. reactive,” she says.
For the past five years, Rashmi has worked closely with Kusyati to understand Gabbie’s needs, help the family understand Ontario’s ‘complex health care system, and connect the family to a wide range of community resources and services.
Rashmi has wrapped the circle of care around Gabbie and her family. She has arranged for the necessary supports for Gabbie to live safely at home. Rashmi anticipated the family’s needs in caring for Gabbie. She was able to source the necessary medical equipment through Easter Seals and the provincial assistive devices program that the family needed, such as a walker (Gabbie is not able to stand on her own), a bath chair, stroller, as well as lifts for the family van and the home entrance. Rashmi also arranged for personal support workers to help with Gabbie’s bathing, dressing and eating as she is unable to eat, bathe, or toilet herself.
Taking care of a child with high care needs is not easy. To manage Gabbie’s care Kusyati works the night shift, so that she is able to care for Gabbie during the day. Gabbie’s older sister also helps to care for her sister. Rashmi is very in tune with this family’s needs – connecting the family with resources and funding locally and provincially.
“I connected Kusyati to resources in the community. I was able to get her enhanced respite care through the Ministry of Community and Social Services,” explains Rashmi.
Kusyati explains, “I’m very pleased with Rashmi. I tell her my problems and issues and she is a good listener. I need someone to talk to and she is the perfect person to talk to. She works to pull all the resources together. I had no supports before.”
Rashmi has been involved in several school case conferences with the family, service providers and school staff to ensure that Gabbie would get the help she needed to attend school. Today, Gabbie attends school in a special needs class, getting to school in a specially-equipped wheelchair bus, which picks her up in the morning and returns her home at the end of the day. While in school, Gabbie is assisted by a specialized Educational Assistant. She also receives occupational therapy to improve her balance and develop fine motor skills, and physiotherapy to help her with movement and mobility.
Gabbie’s care is not easy. She requires care 24/7. It takes 45 minutes to one hour just to feed her. She has daily seizures and is exhausted afterwards. Her condition is alleviated by a number of medications and her family’s love, devotion and care. Despite her health condition, she is a happy child. Although she cannot talk, she communicates through body language and sounds. She loves to be hugged, tickled, sung and spoken to.Gabbie continues to make progress and with the care and services of the Mississauga Halton CCAC she is able to remain at home, where she is nurtured and loved.