Seattle nurse vows to create region’s first hospice for children

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She pages through a book of photographs filled with the faces of children. And the letters they’ve written.

The images are of young people who lost their battle with cancer, but spent their final months expressing thoughts about life, love and hope.

Suzanne wants to make sure those final months can someday be spent not in a hospital, but in the nurturing environment of a children’s hospice.

“We can do this,” said the oncology nurse, who has worked at Seattle’s top hospitals. “We can set an example and a template for the rest of the country and show them what can happen when a community comes together and cares about their children.”

This has become Suzanne’s mission since she learned years ago that there are only two children’s hospices in the entire country. Not one in all of the Pacific Northwest, not even Seattle.

“Because it makes people feel uncomfortable nobody’s talking about it and therefore nothing is being done,” said Suzanne.

She has more than thirty years of experience taking care of cancer patients, mostly children.

“Somebody needs to do this. I’m somebody,” she said. “So I founded Ladybug House.”

For the past two years Suzanne has dedicated herself to organizing, advocating and fundraising on a quest to transform her idea into reality.

Ladybug House has gained momentum and support, but what the project needs most is $12 million and a 3-to-5-acre plot of land to start build what she envisions to be a state-of-the-art facility serving young people in need of hospice care.

While some families of terminally ill children are able to take their children home, the burden on parents can be overwhelming.

Gienna Njie is a mother who was stunned to learn there was no hospice option for her daughter, Ahmie, who passed away June 14th after battling a rare sarcoma.

“Kids do die and kids do suffer and they need a place where they can go to be happy,” Gienna said. “It’s so important that kids and their families can live in the moment in the last days and do some amazing things and have memories.”

And that, according to Gienna and Suzanne, is the unique setting a hospice can provide. Hospitals, they say, provide excellent care, but the end-stage of life does not have to unfold in a clinical setting.

“Ladybug house will be a place not just about end-of-life care,” Suzanne said. “It’ll be a place where families have a break during the unimaginable, during those hard times. They don’t have to be the caregivers all the time. They can be cared for.”

The hospice will also provide opportunities for children to express themselves through art, to have pets available and to interact with other families going through the exact same experience.

Suzanne’s plan calls for suites where families can sleep overnight for extended periods of time, and communal kitchens where people can cook their own meals or have meals prepared for them.

“It’ll be a place where legacies and memories can be made and where families can celebrate every day,” she said.

Gienna says it was a privilege to be the primary caregiver to her 14-year-old daughter, but the stress of becoming a de-facto home nurse was daunting at times.

“I would not have wanted to be anywhere else, but it was exhausting and it took away from actually being able to spend as much quality time with her, to just be a family without worrying about oxygen tanks and medications,” she said.

Gienna describes her daughter as strong, creative and filled with exuberance for living life to its fullest.

“She was somebody who could walk into a room and everybody would smile and say, ‘who is that beautiful girl?'” Gienna remembers. “Ahmie was well-loved and she was such a phenomenal person and a loving person.”

In the moments when Ahmie was in greatest pain, they would touch their heads to one another and focus on breathing. And then they would talk.

“We started to have conversations about what we could do to help other children that were suffering,” said Gienna. “I said if you’re not here I will make sure that children don’t suffer as much as you have had to suffer.”

Gienna learned about Suzanne’s mission to provide a hospice option to children like Ahmie.

When moments of discouragement or frustration arise, Suzanne finds inspiration in that book of children’s photos and letters.

“When I think I can’t do it any more I look in here and remember that I don’t have a choice,” she says. “This isn’t about me. It’s about them. It’s about them and their families and that they all deserved better.”

Suzanne says the U.S. Is far behind other countries when it comes to providing hospice care for children. There are more than 50 in the United Kingdom, 8 in Canada and 5 in Australia.

The children’s hospices in the U.S. are in California and Arizona.

It is frustrating for Suzanne and her supporters that there are about 3,000 hospice facilities for adults in this country and 400 for pets.

560,000 children across America are currently living with life-limiting illnesses.

Ladybug House has adopted a mission statement: “If we cannot add days to the life of a child, we will add life to their days.”

When you meet and listen to Suzanne Gwynn, you leave believing that she will succeed — that in the near future Seattle will have a hospice that will transform the lives of children and their families.

The following links provide more information about Ladybug House and how people can help. www.ladybughouse.org

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