When Janna Cheng’s husband Steve was diagnosed with a terminal illness in March 2007, it was devastating for the entire family but particularly their daughter Jenny, who was only 12 at the time.

To help Jenny cope with her father’s illness, Janna was referred to Mount Sinai Hospital’s Max and Beatrice Wolfe Centre for Children's Grief and Palliative Care.

The Centre provides support for children and youth, as well as their families, before and after a loved one’s death. The counsellors help educate and support children through stories, play, music, movement and visual expressive arts. There is no charge for the Centre’s programs, which are unique in Canada.

“Jenny was always close toher father, but after the diagnosis things changed,” says Cheng, whose husband was diagnosed with Amyotrophic Lateral Sclerosis – also known as ALS or Lou Gehrig’s disease. “Steve’s disease progressed aggressively, and Jenny struggled with this. Sometimes it seemed like she was avoiding him.”

ALS is a progressive, usually fatal neurodegenerative disease that causes degeneration of the nerve cells in the brain and spinal cord. As the disease progresses, the brain loses the ability to control muscles and patients may become totally paralyzed.

 “Our society is full of kids grieving in lonely silence when a loved one is dying or has died,” says Lysa Toye, Counsellor and Expressive Arts Therapist at the Max and Beatrice Wolfe Centre. “The lifelong impact is profound.”

Jenny felt isolated in her grief and did not talk about her feelings with her parents, Janna says. But counsellors work hard to be flexible and provide counselling at the Centre, in the home or by phone. Toye spent more than nine months with Jenny before Steve’s death and helped support the Cheng family.

“Lysa was always straightforward about my husband’s disease and prepared Jenny to face her father’s death,” says Cheng. “She visited Jenny’s class to discuss death and grieving, but at Jenny’s request, did not mention which student was experiencing this situation. Because of Lysa, Jenny was brave enough to tell her classmates about her father’s illness.”

In December 2008, Steve died of ALS. More than 50 of Jenny’s classmates and teachers came to the church service to support their friend. Even today, Toye meets occasionally with Jenny to provide continuing support.

“I feel better now than I did when my Dad was dying,” says Jenny, who turns 15 in August. “It was helpful to talk to Lysa because there weren’t a lot of people that I wanted to talk to.  I’ve had time to get used to being without him.”