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Welcome to the Butterfly Guild!

The Butterfly Guild aims to raise money to fund exploratory, developmental, and novel research that will ultimately lead to healthier, happier, and longer lives for children diagnosed with Shwachman Diamond Syndrome.

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Annabelle's Story

After months of unexplained illness, rashes, weakness, discomfort, inability to keep down food, and loss of weight, Annabelle was diagnosed with Shwachman Diamond Syndrome at 6 months old. Annabelle is pancreatic insufficient, which means she needs to take pancreatic enzymes with each meal to be able to process her food. Annabelle is also neutropenic, which means that her body frequently does not produce enough neutrophils, the type of white blood cell that fights bacterial infection. Due to her lack of neutrophils, every fever Annabelle gets means a trip to the hospital and a potentially life threatening infection. Because she has Shwachman Diamond Syndrome, Annabelle has an increased risk of developing Leukemia. Annabelle is treated at Seattle Children's Hospital. With the help of research funded by the Butterfly Guild, our hope is that Annabelle, and many other children just like her, can have a better chance of living a long, happy, and healthy life.

 

Mike1

Mike's Story

Mike and his family frequently travel from Montana to Seattle Children's for treatment . Mike was diagnosed with Shwachman Diamond Syndrome in Spring of 2009.  He was 12 years old at the time and on his way to earning his belts in Taekwondo.  Some of the signs included lots of bruising, especially after he become competitively involved with Taekwondo.  Mike’s blood was tested for abnormalities.  Low blood cell counts were just the beginning of what Mike has endured.  Mike has had bone marrow biopsies, ear surgeries, and numerous tests. Finally, he was diagnosed with Shwachman Diamond Syndrome.  The diagnoses offered an explanation as to why Mike, over the years, has had infections, rashes, lack of energy at times, stomach aches, and easy bruising.  Now Mike gets monthly blood draws and bone marrow biopsies every six months.  He takes numerous vitamins as well as enzymes for his pancreatic insufficiency. He has eye drops to fight an ongoing staph infection. Mike faces many challenges that seem never-ending due to absences from school and limited social interaction.  Despite the many challenges and roadblocks, Mike lives life to the fullest. He has not been able to go back to Taekwondo, but he and his family hope that may change someday.  Mike does, however, love to dance, listen to music, and play on the computer.  To Mike’s family, he is nothing short of a hero.


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About Shwachman Diamond Syndrome

Shwachman Diamond Syndrome is an inherited bone marrow failure disease that mainly affects bone marrow, the pancreas, and the skeleton. Other organs may also be affected. Frequently those with Shwachman Diamond Syndrome have a decreased ability to digest food and do not produce the blood cells necessary to fight bacterial infections, which can quickly become life threatening for patients with Shwachman Diamond Syndrome.

Research

The Butterfly Guild recognizes that exploratory research is integral in furthering treatment for persons diagnosed with Shwachman Diamond Syndrome. We hope this funded research will ultimately result in better treatment, longer life expectancy of diagnosed patients, and one day a cure for Shwachman Diamond Syndrome.

Education

The Butterfly Guild hopes to build awareness of Shwachman Diamond Syndrome in the Seattle community and beyond. We hope to educate not only doctors but also parents and the community at large about this rare bone marrow failure disease that can affect many components of the body.

 

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