Hi! I’m Hailee. I have a rare disease called Morquio syndrome that keeps me small. Because of my disease, I’m at Seattle Children’s a lot. And I think it’s the best place ever! If I gave Seattle Children’s a grade, it would be A+++ triple rainbow infinity!
Greetings and happy holidays from Seattle Children’s!
Connection magazine honors your support and its impact on the patients and families we serve every year. This issue focuses on just one of those patients — Hailee. In the following pages, you’ll meet her and some of the extraordinary people who make it possible for her to live her life to the fullest. It is a privilege to acknowledge Hailee, her family, her team at Seattle Children’s and community members like you who are generous champions for kids like her.
In January 2019, at the age of 3, Hailee was diagnosed with a rare genetic disease known as Morquio A. It impacts Hailee’s bones, organs and soft tissues and has no known cure. When you read about Hailee and those who support her, we think you’ll be inspired by how her family found hope at Seattle Children’s thanks to expert care teams and people like you.
It was particularly fitting that while we were writing this edition of Connection, Seattle Children’s received a surprise estate gift. Howard Storhoff and his wife, Helen, believed in living lives of honor, hard work, humor and goodwill to others. They thought all children, no matter their parents’ financial status or background, should have access to quality healthcare and a pathway to success through education. Because of this, the Storhoffs gave a generous portion of their estate to Seattle Children’s Uncompensated Care Fund.
Though the Storhoffs never met Hailee, their gift will support her and other children like her. Uncompensated care is the bedrock of Seattle Children’s. It helps nearly every patient and allows us to fulfill our founding promise to care for all kids, regardless of a family’s ability to pay.
In this season of gratitude, we thank you for wrapping children and families in support and care with your gifts to Seattle Children’s. From estate bequests to historic fundraising events (cheers to 25 years, Friends of Costco Guild!) and from grocery store PIN pad donations to fun runs, every gift counts when kids like Hailee are counting on you.
As this issue went to press, we learned that U.S. News & World Report has recognized Seattle Children's as one of the top 10 best children's hospitals in the U.S. — and best in the Pacific Northwest. Your commitment and support as a donor is part of the foundation upon which achievements like this are built. On behalf of all kid-kind, thank you.
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Suzanne Beitel Senior Vice President |
Dondi Cupp Senior Vice President |
Seattle Children’s financial assistance program is the most generous of any pediatric hospital in the Pacific Northwest. Last year, we provided more than $375 million of care not covered by insurance or Medicaid, $21 million of which was contributed by generous donors.
“There’s just no way we could do all of this and handle all of this, if not for financial aid,” says Tiffany, Hailee’s mom. “There are so many worries when you have a medically complex kid, and you don’t want ‘How am I going to pay for this?’ to be one of them.”
Learn more about Hailee, Tiffany, Jason and Jonah’s experience with Seattle Children’s.
“I view my role as looking at a patient beyond their diagnosis and ensuring they have the best quality of life possible,” says Gailon Wixson, MSW. “What are their goals for when they're getting older? How are they doing at school? What support do they need? Those questions might not come up in a typical doctor's appointment without the viewpoint of a social worker.”
“One of the goals is to teach Hailee what's going to happen,” explains Yifan Wang, Child Life specialist, who made a custom bear for Hailee. “The second is to help her feel like she isn’t going through it alone, that she has a stuffy buddy who's also going through it with her.”
For a 9-year-old, Hailee keeps a busy schedule. In between weekly enzyme infusions and her beloved arts and crafts activities, Hailee and her family share their story at events to bring awareness of her diagnosis and raise money to help kids just like her. Read more.
Interested in getting involved?
“To everyone who is donating to Seattle Children’s, I want to say thank you. Whether it’s one dollar or millions of dollars, every penny is worth it. I see your generosity reflected in my son’s life.”
— Karina, Christian’s mom
“We hear positive feedback over and over again because we treat families with respect. We work hard to help families recognize that this is a partnership. We are here to help.”
— Suzanne Vanderwerff, vice president, Revenue Cycle and Health Information Integrity
Thank you for helping every child live the healthiest and most fulfilling life possible – today, tomorrow and always.