Excerpted from an article by Lindsay Holtz and Tim Close, Damian’s Parents
“Our son Damian would live for just seven days….
During our journey with Damian, we were terrified when we learned he might die and then again days later when we were told he would die. If that wasn’t enough, as the hospital could do no more for him, we would be sent home to care for him – alone. We were barely standing as it was. It seemed inconceivable that we could learn the complex care they were rattling off and more importantly, ensure someone was with him for every last minute that he would give to us.
Emily’s House provides the end of life and respite care that is so incredibly important to dying and terminally ill children and their families. Relentless support and compassion during the final days and months of a child’s life and a period of difficultly and grief for all around them.
That there are only six paediatric palliative care facilities in Canada, 58 beds, makes no sense – neither in compassion nor in dollars. It is clear that families need this support. A day of care at Emily’s House is about $1,000 versus three times that amount at a hospital. And, from the perspective of a family that would have welcomed this support, this is a benefit that cannot be quantified.”