House of smiles

CHRIS SIMNETT
AHS Communications

Cassandra Patterson's face lights up inside the Rotary Flames House.

The five-year-old has a rare genetic disorder that doesn't have a name or any other documented cases in the world. Caring for her is a 24 hour a day, seven day a week job for parents Illisha and Ian. Seeing her smile is priceless.

That's why the Rotary Flames House, Alberta's first free-standing pediatric hospice and one of only six such facilities in North America, is a sanctuary for the Patterson family.

They had input into the design of the facility, which is located right next to the Alberta Children's Hospital in Calgary. It features large windows that open, allowing fresh air to flow into the building, big, comfortable chairs for prolonged cuddle sessions between parent and child and myriad other amenities.

"It is very nice to feel heard and cared about," Illisha told a crowd of dignitaries at an open house for the facility, which is scheduled to open in November.

The House was built with donations from the community, including $2.5 million from the Rotary Clubs of Calgary and the Flames Foundation for Life.

"This house is so beautiful," says Conny Betuzzi, Manager of the Rotary Flames House. "It wouldn't be possible without the generosity of the people who have supported it."

Cassandra and her parents have already had a chance to tour the House. Cassandra was captivated by the Multi-Sensory Room. The room is filled with lights and sounds that even children with very limited mobility can manipulate.

"She had so much fun in the Multi-Sensory room," Illisha says. "We saw her smile - and that's very precious to us. It makes me cry just thinking about it."

The House is designed to bring out tears of joy for families dealing with very trying situations.

"This is really a positive place, a place where we can support families who are coping with challenges we can't even imagine," says Betuzzi. "It's a place that's warm and safe - a home where the focus is on the quality of life for the child and their family"

It's a medical facility that doesn't feel like a hospital.

"For families, part of having this house is validation and acknowledgement that we understand that their children are precious and we want to provide them with programs to support their quality of life," says Dr. Marli Robertson, Medical Lead for the House. "It gives families choice where they previously haven't had choices. We will have 24 hour specialized care with nursing and palliative care physicians. The house is able to provide the high-intensity technological care that children need but in a place that is home-like and where there will be fun things to do.

"Previously the choice was to have children admitted to the hospital. This isn't a hospital, it's a house. When children are here for a short break, their bedrooms are just their bedrooms. It will be like being in a home."

The main floor is filled with a huge, bright kitchen, quiet library and fun, exciting rooms such as the Rec Room, where kids can do crafts, watch TV and play games, the Flames Games Room, which is filled with air and table hockey games, a video game system and foosball tables, and the Multi-Sensory Room.

The rooms on the main floor are equipped with a track lift system so children can be safely and easily moved from one area to another.

Huge fish tanks are found throughout the house. A large sunroom lounge is located upstairs while outside there is a covered, heated gazebo that features a light-up solar system on the ceiling - perfect for those who want to stargaze.

"They have thought of everything in this place," says Betuzzi.

And not just for the patients.

"A lot of rooms are designed to support siblings," Betuzzi says. "Siblings can be here and have a variety of activities to participate in so they don't feel that they are on the outside looking in or having to wait patiently in a hospital room with nothing to do.

The family suites are self-contained with a king-sized bed for the parents, a separate living area and a bedroom for the child.

The aim was to make the facility as comfortable as possible. The House is a home away from home for children and families dealing with end of life issues, transition from acute care to being at home or a place children can go for up to 14 days to provide respite for weary parents.

"This is a fabulous sanctuary for families," says Ken Hughes, Chair of the Alberta Health Services Board. "Caring for an ill child is exhausting physically and emotionally and supports have to be there to free that family up just to be a family."