Yusuf's Day of Hope
Yusuf’s Day of Hope is a non-profit organization that raises funds to support the Norman Saunders Complex Care Initiative at the Hospital for Sick Children in Toronto. Named after little Yusuf who suffers from a rare genetic disorder. The organization was founded by his parents Imam Imran and Kameeza Ally in 2007 after Yusuf’s health continued to deteriorate. It was their hope that this small but sincere initiative will be a way to give back to the hospital, and bring awareness of the tremendous work the Norman Saunders Complex Care Initiative at the Hospital for Sick Children is doing.
Every summer, friends, family come together for Yusuf’s Day of Hope. The event is a fun way for the community to come together to thank and to raise fund for the Hospital for Sick Children.
Yusuf has a smile that lights up a room and the charms that will melt your heart but no one can imagine how much he has endured in such a short time. Within weeks of being born, Yusuf was diagnosed with Klebsiella Meningitis, an inflammation caused by bacteria that affects the protective covering of the central nervous system. He was treated at the Hospital for Sick Children (SickKids) in Toronto, but during his stay additional serious conditions developed. Yusuf suffers from a rare genetic disorder that causes multiple organ dysfunction and numerous infections. His life is anything but normal, as he spends a significant amount of time in the hospital battling one complication after another. After countless admission to the ICU and his progression to Palliative Care, Yusuf’s doctors did a trial treatment as part of their humanitarian effort which made an incredible difference in his life. As a result of this treatment, Yusuf is now at home with his mom, dad, and his two brothers.
In 2016 Yusuf underwent another one of his many surgeries and spent four months in hospital due to complications and his need for rehabilitation. He still goes to SickKids every couple of weeks for a transfusion and treatment but despite his complexity, he remains a happy and playful child. Yusuf is seen by fourteen distinct sub-specialists at The Hospital for Sick Children in Toronto.
Norman Saunders Complex Care Initiative
Imagine caring for a child who has twelve different medical problems; is treated by twelve distinct sub-specialists, requires home care, has school issues and falls sick continuously. For parents and caregivers of children with medically complex conditions, this is life. These children are a diverse group with diagnostic conditions that are individually rare but collectively relatively common. Children with Complex Health Needs (CCHN) are a vulnerable and growing group of children who have multiple health needs, requiring multiple services from multiple sectors in multiple locations. Care coordination for this population of children is challenging and if not optimized can lead to poor child and family centered health. The Norman Saunders Complex Care Initiative, affectionately known as ‘Complex Care Program’ at the Hospital for Sick Children provides specialized care and services for such children. The Complex Care Team is made up of staff physicians, nurse practitioners, CNS, social workers, pharmacists, dieticians, occupational therapist, physiotherapist, information coordinators and a clinical director.
For further information to the Complex Care Program at SickKids, please click on the link below.