A seven-year dream is becoming a reality as supporters recently gathered to break ground on a new children's hospice in Riverdale.
Emily's House, a state-of-the-art facility for children with life-limiting illnesses, is named after 18-year-old Emily Yeskoo, who attended the ground breaking event.
Emily was diagnosed with a rare and serious progressive disease called metachromatic leukodystrophy when she was just 10 years old. The terminal neurodegenerative disease has symptoms similar to muscular dystrophy, Alzheimer's disease and Lou Gehrig's disease.
Faced with the daunting task of providing round-the-clock care for Emily, the Yeskoo family started receiving weekly non-medical visits about four years ago from the Philip Aziz Centre, an 80-volunteer strong non-profit organization that provides in-home practical, emotional and spiritual support to Toronto residents of all ages living with HIV/AIDS and other life-threatening illnesses.
Emily, whom doctors believed would only live for three years after her diagnosis, is now bedridden and unable to speak but still understood the magnitude of this special day, said her mother, Lindsay Yeskoo.
"Emily is just so thrilled that she has a legacy," said the North York resident at the official groundbreaking ceremony on Sept. 15.
"She always wanted to make her own impact and improve her own corner of the world. Because of the Philip Aziz Centre, Emily's been able to do more than we could ever imagine."
Yeskoo said her eldest daughter wants the children's home in her name to be a place of blessing for families.
"This is a place where life can be lived to the fullest it can be," she said, expressing her gratitude to AmbuTrans Non-Emergency Ambulance Transportation for donating its services for the day so Emily could attend the groundbreaking event.
"This is a very special beginning for a very special house. I still can't believe it's happening," said Rauni Salminen, executive director of the Philip Aziz Centre, the organization behind the new children's hospice, as she choked back tears of joy.
"Emily's House will offer a helping hand along a very difficult path. We want this home to be a place where kids can just be kids."
Toronto-Danforth Councillor Paula Fletcher was equally moved and touched by the special occasion as she welcomed all involved with the new children's hospice to the community.
"It's a wonderfully beautiful corner in our community," she said.
"The vision and the tenacity of the board has really meant this is a reality today. There are a lot of people working very hard to create Emily's House."
Dr. Adam Rapoport, an expert in pediatric palliative and bereavement care at Sick Kids Hospital, has known Emily for several years and was thrilled to be part of the special day.
"It's an initiative dear to my heart," he said, adding the facility would fill a significant gap in the services available for children needing palliative care.
Rapoport, who said the young woman has impacted his life both personally and professionally, said Emily's House would be a warm and supportive place of respite for families, a place of transition from hospital to home and a place for quality end-of-life care.
"This children's hospice will be there for you," he said.
The new 12,000-square-foot facility will transform a disused and derelict circa-1888 heritage building at 562 Gerrard St. E. at Broadview Avenue into a 10-bed, $7.5 million children's hospice.
Known as the Governor's House, the building was once the residence of the Old Don Jail's prison keeper and his family. Used as a clubhouse for guards from the neighbouring Don Jail, it has sat vacant for more than a year.
Emily's House will also feature an outdoor water feature, seating areas, a multi-sensory 'Snozelen' therapy room and a new main access point off the Don Jail Roadway.
The underused two-acre site, which is already zoned for health-care purposes, is just steps away from the Riverdale library as well as park land.
It's also on the same parcel of land as Bridgepoint Health, a hospital for patients with complex chronic disease and disability, and is just a few kilometres from the Hospital for Sick Children as many of its patients would also likely be patients of the University Avenue hospital.
The Philip Aziz Centre (PAC), founded in 1995 through a bequest from a Toronto art teacher who died of an AIDS-related illness, is behind the project, which involves building a three-storey addition along the north wall of an existing two-and-a-half-storey building to meet standards set by the Ontario Ministry of Health and Long-Term Care.
A small gatehouse on the site, called the Gatekeeper's House, is now being renovated for administrative uses for PAC's community programs as well as a children's hospice. Staff members hope to move into their new office space this fall.
Emily's House is the third pediatric hospice to be built in Ontario and the sixth in Canada.
Currently, there is no other option in Toronto for the family of a child with a life-limiting illness other than to go to a hospital when out-of-the-home palliative care is required.
Emily's House will meet that need by providing quality respite and end-of-life care 24 hours a day, seven days a week by qualified professionals who specialize in pediatric care. The new hospice will also provide ongoing family support, pain and symptom management, assistance with the transition to home from hospital following surgery or illness, and spiritual and bereavement care.
Emily's House is expected to open in late 2012.
The Philip Aziz Centre will hold a meeting in the near future to let the community know more about the project and get feedback.
Visit www.philipazizcentre.ca for more details or to make a donation.