Jacob Schwartz’s Legacy
As long as we live, they too will live; for they are now a part of us; as we remember them.- Jewish Prayer
Jacob Schwartz was beloved by all, a true inspiration who taught many how to navigate life’s unforeseen challenges with courage and grace. To honour a life filled with happiness, compassion and the determination to raise awareness for neurodegenerative conditions, this is a snapshot of his story and the lasting impact he will continue to have on medical research, education and therapy.
Jacob was born with a neurodegenerative condition called Canavan Disease. Children with Canavan Disease cannot walk, talk, sit or eat making them totally dependent on caregivers to help them with everyday tasks and communication. There are numerous challenges involved in raising a child with any neurodegenerative condition, however both Jacob and his family proved to be outliers determined to break down the barriers and preconceived notions surrounding children living with disabilities. Sadly, Jacob passed away in January at the age of 21.
Photo caption: Jacob Schwartz and family
Dr. Jeremy Friedman, Associate Paediatrician-in-Chief at SickKids and on the board of directors of Jacob’s Ladder, discussed Jacob’s legacy and the extensive impact the Schwartz family continues to have on neurodegenerative research and awareness.
"I was amazed by how little Jacob needed to come to SickKids..."
“I was amazed by how little Jacob needed to come to SickKids, and on the rare occasions he did visit the hospital, how content he always seemed. Often children with neurodegenerative diseases require frequent hospitalization because of various symptoms stemming from their conditions, however Jacob was different. He radiated joy and happiness. His personality, love for family and friends and exposure to life’s pleasures like music and swimming highlighted how a high quality of life positively affected his condition. The incredible love and care Jacob received from his family, a fantastic team of caregivers and a great network of extended family and friends emphasizes how huge a role ‘non-medical’ support plays in the life of a child with disabilities.”
Jacob and his family created Jacob’s Ladder (Canadian Foundation for Control of Neurodegenerative Disease) in 1998, shortly after Jacob’s diagnosis and dedicated it towards research, awareness, education and therapy for neurodegenerative diseases. Originally aimed at helping other families who have children with forms of neurodegenerative conditions, the charitable organization has since grown into much more. It provides prospective parents in high-risk demographics with screening to determine whether they are a carrier for a neurodegenerative genotype, funds research into finding cures for children born with related conditions, and brings the best doctors and scientists to SickKids to deliver educational and cutting-edge research rounds.
In total, Jacob’s Ladder has generously given over $800,000 to research initiatives at SickKids, enabling senior scientists like Dr. Gabrielle Boulianne to undertake new projects investigating the cause of infantile neuroaxonal dystrophy (INAD) and related rare neurodegenerative diseases that stem from the single, poorly understood gene known as PLA2G6. Jacob’s Ladder continues to be instrumental in helping Dr. Boulianne establish robust Drosophila (Fruit Fly) models, a demonstrated value tool for increasing knowledge on PLA2G6 mutations in humans. Using the Drosophila model, drug screening can be conducted to identify compounds that supress INAD and related conditions, helping inform therapies for a broader spectrum of neurodegenerative diseases including Canavan Disease.
Jacob was also one of the key inspirational players behind the development of the Norman Saunders Complex Care Initiative (NSCCI), which supports research training and academic activity related to the clinical care of children with complex health challenges. Jacob’s Ladder has contributed to the NSCCI fund, providing SickKids researchers with seed money to pursue research ideas that are currently not the targeted areas of conventional funding agencies.
Jacob’s naturally happy disposition helped demystify many of the aspects surrounding his condition. His family involved him in everything they did, and they encouraged other children to interact with Jacob and his caregivers to learn about his disability when he attended things like summer camp. Given Jacob’s love of swimming and music, Jacob’s Ladder also funded the construction of a therapeutic pool in the Schwartz/Reisman community centre in honour of Jacob. It allowed countless others to experience the therapeutic benefits of heated, salt water aquatics. His large entourage also created a song in his honour called “I Rise Above.” The song was written by his friends and family members and shares Jake's messages, reminding us of life’s simple pleasures and the power of the here and now.
In addition to Jacob’s Ladder, Ellen Schwartz, Jacob’s mother, also started an in-school philanthropic program called Project Give Back. Encouraging nine and 10 year-olds to research a charitable organization that resonated with them, students go on to present their charity of choice to their fellow classmates. Not only does this serve as a great philanthropic educational tool for younger generations, but it elevates interest in a number of local charitable organizations, including SickKids, as the program has been adopted across school boards in the Greater Toronto Area.
All these different initiatives highlight some of the impact and legacy this young man and his family continue to have on the broader community. On behalf of all of us at SickKids Foundation, our sincerest condolences to the Schwartz family and heartfelt thanks for your generosity.
To learn more about Jacob’s Ladder, please visit: https://jacobsladder.ca/
