The Butterfly Guild

Butterfly Guild

Joe and Sarah Bowman knew something was wrong with their daughter, Annabelle, almost from the minute she was born. She was strangely lethargic and suffered from digestive problems and nonstop staph and skin infections. Then, when Annabelle was just six months old, Seattle Children’s doctors delivered a sobering diagnosis: she had Schwachman-Diamond syndrome (SDS).

SDS is a rare genetic disorder that triggers bone marrow failure, limits the body’s ability to make infection-fighting white blood cells and stops the pancreas from making enough enzymes to digest food. Doctors can only treat SDS’s symptoms, usually with enzyme supplements and medicines that boost white blood cell production.

Annabelle’s diagnosis meant she would face a higher risk of leukemia and would have to be rushed the emergency room every time she had a fever, so doctors could contain the infection before it spun out of control. It also meant the Bowman family had a new mission: Help find a cure.

“We were lucky because one of the world’s best SDS doctors, Dr. Akiko Shimamura, was right here in Seattle,” Sarah Bowman says. “She told us SDS researchers needed seed money for studies that pursue new treatments. Our only question was: how much?”

Laying the Foundation for New Therapies

The Bowmans started the Butterfly Guild in 2010. The guild hosts an annual fundraiser and auction and has already raised more than $300,000 – enough to make it one of the nation’s leading funders of new SDS research.

The guild has supported several pilot studies to investigate the mechanisms behind SDS, helping researchers understand the disease and laying the foundation for new therapies. These studies usually cost between $30,000 and $40,000 and generate the results needed to apply for larger grants.

The guild’s funds have also helped Shimamura and her colleagues continue the Schwachman-Diamond Syndrome Registry, which gathers medical information and blood- and bone marrow samples from patients with SDS around the country. Shimamura’s team analyzes this information to unravel how SDS develops, and to search for clues on how to improve diagnosis and treatment.

Making a Difference in the Community

Today, Annabelle takes supplements six times a day, gets regular bone marrow biopsies to test for leukemia, and is hospitalized for even minor infections. Otherwise, she’s a typical 4 year-old – she goes to preschool, loves to draw and play with stickers, and is learning to write her name.

“It’s really important to us that she has a normal childhood, even though we have to be a little different than most families – we wash hands like crazy and our kids change clothes the second they get home from school,” Sarah Bowman says.

While Annabelle is too young to understand all the details about the guild’s work, it has become part of her everyday life. She and her brother love it when items donated for the auction come in the mail.

“The guild has been an awesome way to teach them about making a difference in the community,” Sarah Bowman says. “They know we do it to help sick kids, and so that someday Annabelle won’t have to go to the hospital so much.”