Who We Help
Families Touched by the Unforgettables Fund
The words are awful enough: undiagnosed neurodegenerative disease, microcephaly and brain atrophy, laryngomalacia and stridor, encephalitis, and necrotising entcrocolitis. But the knowledge that these words apply to little children makes the sadness even greater. The families that have lived through these medical conditions have often sacrificed their income, mortgaged their homes, depleted their savings, maxed out their credit cards and lines of credit and borrowed from relatives, in an effort to spend one more day, one last moment with their dying child.
In 2011, The Unforgettables Fund helped six bereaved Eastern Ontario families memorialize their children through a dignified funeral or public ceremony to reach out to their support network of friends and family in their time of greatest need. Here are some of their stories.
Please note that children's names may have been changed out of respect for the family's privacy.
Nawaz (7 months old)
Nawaz was born prematurely at 28 weeks. At birth, Nawaz was intubated to assist his breathing. He remained in hospital until July, only to return to CHEO in August where he moved in and out of intensive care for various medical complications. He was diagnosed with an undetermined genetic syndrome. He was tube fed. In October, Nawaz lost his battle and passed away peacefully at Rogers House.
Given his medical situation and fragility, the family's adjustment to their son's diagnosis and complications of his syndrome were tremendously difficult emotionally, mentally, spiritually and physically on this family. Mother spent most of her time between the hospital and caring for her older child. Father was torn between keeping up the family income, visiting Nawaz in hospital and caring for his family at home. Since the family had relocated to Canada in mid-2000, they had few supports here to assist them, not only financially, but emotionally as well. They reached out to TUF for funds to properly memorialize their young son so that he would not be forgotten.
Ahmed (6 years old)
Ahmed was the only child of two very devoted parents. Ahmed had been followed long-term by the Palliative Care team due to his medically complex condition (an undiagnosed neurodegenerative disease). Ahmed's mother put her career on hold to care for her son and the family managed on one income for 6 years. Ahmed was finally transferred to Roger's House for end of life care. Upon his death, his bereaved parents reached out to TUF to ask for help to provide a dignified funeral for their unforgettable son.
Khalil (3 years old)
Khalil had been coming to Roger's House for respite for two and a half years. Before he was admitted to Roger's House for end of life care, and died peacefully. His journey was a long and difficult one, both medically and emotionally. When Khalil became very ill, the emotional strain was too much and his parents separated. This was a very stressful time for Khalil's mother. She became a single parent to Khalil and to her other daughter. There were significant financial stresses as well; the divorce cost Khalil's mother $12,000 in legal fees and she became solely responsible for paying the mortgage on the family home. Despite having stable employment, the costs of the divorce and the many unforeseen expenses associated with having a terminally ill child placed enormous financial strain on this family over a period of three years.
In Khalil's mother's application for financial help from TUF, the Social Worker at CHEO said "I have been very impressed by this mother's strength and ability to juggle incredible demands in her life. The loss of Khalil is something that, tragically, we cannot change. However, I hope that by providing some financial support, we can at least lessen the stress in one area of her life."
Layla (11 months)
Layla has been followed by CHEO physicians since she was a few months old. Upon her death, an accurate diagnosis had not yet been specifically determined. She had travelled to Montreal and Toronto hospitals in search of answers, but none were forthcoming. A few months at Sick Kids Hospital in Toronto depleted the family finances, since the father could not work. The family has been living on credit, and had to borrow more money. Layla died at the Toronto Hospital for Sick Children. Layla’s father reached out to TUF to ask for help to provide a dignified funeral for his baby girl.