Dave’s voice wavers with emotion as he tells the story of his daughter Helen’s life and death.

Mixed in with the grief and sadness of a father is the gratitude he feels about being able to look after his daughter through her journey. Dave, his wife Tracy, children Brianna, half-sisters Kate-Lynn and Erica and his ex-wife Judy all helped in different ways to make Helen’s life as good as it could be during her illness.

Helen was 11 when she was diagnosed with Hallevorden Spatz Syndrome, also known as neural degenerative brain iron with accumulation, on December 17^th, 2005 at the Hospital for Sick Childrenin Toronto.

During the next two years Helen would undergo several operations, lose the ability to walk, talk and see clearly. As Helen ’s health deteriorated she began using a wheelchair because she was falling so often. Dave says his daughter faced the changes with a big smile. St. Elizabeth Health Care staff helped the family with the household needs and Helen ’s personal care. At one point when Helen was in hospital for 70 days, with her dad by her side, the late Michael Pikaart built an addition onto the family’s Brighton home to give Helen her own space when she returned home.

After more than three months in hospital and rehabilitation, Helen was back home in time to start Grade 9 at Brighton High School.

“Helen had a really good time at school then she started having spasms again and had to go back to Sick Kids,” Dave said. Three and a half weeks later she was no better and more help was needed when Helen went home from the hospital. VON and St. Elizabeth staff were needed more often in the home. By April 2007 Hospice Northumberland volunteers were added to the list of people supporting the family.

“Those ladies (Hospice volunteers) allowed us time to relax” Dave said. “They weren’t just for Helen. They talked to the kids and let us go out so we could watch the kids play soccer. Helen used to smile when they came in.” In all, 10 volunteers made up the visiting care team for the family during the final months of Helen’s life.

“The Hospice ladies added grace to the house and we knew we weren’t alone,” Dave said. “When they were there I could close the door and sleep for a couple of hours. The volunteers took some of the burden off while they were there and gave us reassurance life would continue.”

In a world where pressures are sometimes put on parents to take their sick children home from hospital, Dave says without services such as Hospice, the task would be much more difficult. “We still get calls from the Hospice ladies,” he said. “Hospice care doesn’t end at the end of a person’s life.”