Bryce is a high school senior who was active in the community and played Lacrosse on his high school team. During his senior year, he was diagnosed with Evan’s Syndrome. Evans syndrome is a very rare autoimmune disease in which a person’s own antibodies attack red blood cells, which deliver oxygen to body tissues, platelets, and white blood cell that helps fight infection. There is no known cause or cure for Evans. Bryce is no longer allowed to play sports with his platelets being so low and college plans have been put on hold. At StonyBrook Hospital they ran every test on him that you could imagine in an effort determine that it was Evans. Bryce has had 6 IVIG infusions, 9 days in the hospital, 2 IV steroids infusions, bone marrow, and lymph node biopsies and the doctors are still trying to figure out what treatments are best for him. The doctors at Stonybrook do not specialize in Evans, therefore, he will need to be transferred to the children’s hospital in Pennsylvania where they have doctors who specialize in this autoimmune disease. The commute there from Long Island and housing for his family, while he’s being treated, along with the mounting medical bills, has already created a financial hardship for them. They are in need of help with their medical bills, and basic monthly expenses while being in another state away from their home to care for their son. Any amount that you can contribute in support of this wonderful family is greatly appreciated.
With skin as fragile as a butterfly wing, Epidermolysis Bullosa (EB) patients are dubbed "BUTTERFLY CHILDREN”. Our schoolmate, Brian IIg, was born in 2005 with Recessive Dystrophic Epidermolysis Bullosa, or EB. This is a devastating genetic disease that causes the skin to blister and break causing wounds similar to those suffered by burn victims.
Brian was scheduled to start 7th grade in September with his classmates. Unfortunately, because of his declining health that became impossible. Desperate for some relief, Brian, his sister Annalise (his donor) and his mother went to the University of Minnesota where Brian underwent chemotherapy and a bone marrow transplant. We recently learned that his sister Annalise’s cells were 100% engrafted in Brian. Recent test show that he may be able to return to school very soon!
While this is fantastic news, Brian still has a very long road ahead of him. He needs to travel to Minnesota several times a year for check-ups and treatment. While insurance covers some of Brian’s expenses, many of them (ie: travel/hotels/etc.) are not covered.
We thought it would be a wonderful way to welcome Brian to our school with a
SWARM of butterflies! Imagine him showing up for his first day of middle school with the foyer, hallways and cafeteria filled with “Butterflies for Brian”!
In addition to welcoming Brian in this special way, we are also hoping to raise some money for him and his family. We are asking $1.00 per butterfly, however, you can donate as much as you like. All the butterflies will be hung in the school to welcome Brian back to Saxton! All the money raised will be donated to the familty.
For more information on how to donate, please contact us @ KateHenry@optoline.com or Nicole Gruter @ (631) 831-9165 for more information.