LOWER ALSACE TWP., Pa. - A benefit is scheduled Friday night for a young girl in need of both a lung and bone marrow transplant.
From 5 p.m. to 11 p.m., people are invited to gather at the Reading Liederkranz in Lower Alsace Twp., Berks Co., for live music and games, with all proceeds going to the family of Angel Boston.
Angel, a 12-year-old girl from Exeter Township, suffers from severe combine immune deficiency (SCID), a rare genetic disorder sometimes called the "bubble boy disease." SCID leaves sufferers without the critical immune defenses needed to ward off illness.
"So we have to be careful and keep her as protected as we can," said Sara Boston, Angel's mom.
Angel was diagnosed in June 2012 after years of constant sickness and extended hospital stays.
As a baby, doctors diagnosed her as asthmatic but never tested for SCID. Pennsylvania at the time did not require the test as part of newborn screenings, although early detection is often key for successful treatment.
While the state has since joined 15 others in requiring the test, the change came too late for Angel. She now needs both lung and bone marrow transplants, and she spends the majority of her day connected to IVs or nebulizers. She needs to wear a mask when leaving her home.
"It's heartbreaking to see someone so young going through so much pain and, you know, having so many health issues that could be avoided if it was tested for early on in their life," said Megan Lott, a long-time family friend who organized the Liederkranz benefit.
According to Lott, the event is not only meant to raise funds for the family, but to raise awareness for organ donation and SCID testing.
"I can't even say how important it is for people to understand and know that there are options with this," said Lott.
Having fun, however, is another main goal for the evening, and attendees are encouraged to wear Halloween costumes. If she's feeling up to it, Angel will be there too, wearing a purple zebra costume.
"She loves Halloween. It's one of our favorite holidays," said Sara. "I just want everybody to come out, have a good time and raise awareness."
Admission is $10 for adults, $5 for children. Kids under 5 are free. You can also help by donating online.
Allentown, PA 18102
- News DEA via CNN