Life on a wait list: Lower Alsace girl with rare disease waits for complex transplant
Updated On: Feb 07 2014 01:27:34 PM CST
There's a clear consensus among friends and family of Angelique "Angel" Boston. Although the 12-year-old girl is faced with a debilitating immune disorder, she remains a fighter like no other.
"I think when you meet her, you understand something on a different level," said Liz Faranda, a family member. "I would describe her as a white light. She is very graceful."
"She's a very strong little girl," said friend Kyla Karas, age 10.
Diagnosed with Severe Combined Immunodeficiency (SCID), or the "bubble boy disease," Angel endures constant sickness.
The rare immune deficiency deteriorates her body, leaving her constantly weak. She predominantly remains isolated in her family's Lower Alsace Twp., Berks Co., home, requiring constant, round-the-clock care and treatment.
"[Using] numerous nebulizers, inhalers, antibiotics, IV medications," said Sara Boston, Angel's mother. "She's always doing something."
"It really is rough for her on a daily basis… just to do the normal things you and I take for granted, like breathe," said father David Boston.
But that isn't the story you'll get from Angel, who downplays the severity of her disease with positivity, even when speaking becomes a strain.
"I feel fine," Angel told 69 News through coughs.
"She's always happy, always smiling," said Sara. "This whole time, she's never asked 'Why me?'"
But never-ending illness has been Angel's reality since birth when doctors early-on missed her diagnosis. She spent years fighting infection after infection, including several bouts of pneumonia.
While Pennsylvania now includes SCID testing as part of required newborn screening, that wasn't the case when Angel was born. It wasn't until age 10, when doctors finally realized what was causing her unrelenting symptoms.
"I'm just happy they finally gave us a diagnosis, and we can finally work for a solution to the problem," said David.
Now, Angel awaits a complex procedure to survive - a bilateral lung transplant and bone marrow transplant. According to doctors, the latter normally serves as a SCID cure alone, but Angel's body has deteriorated too much to handle new bone marrow without new lungs.
"That puts an extra bottleneck in terms of finding the perfect donor," said Dr. Paul Szabolcs, chief of the division of blood and marrow transplantation and cellular therapies at the Children's Hospital of Pittsburgh. For roughly one year, Szabolcs has served as Angel's specialist, seeing her once a month for treatment.
He said Angel would be only the fourth known patient ever to undergo the dual procedure, but it wouldn't be the first time she's beat the odds.
"It's quite remarkable that she's with us," said Szabolcs, who explained that most with SCID will die by age two if the disorder goes undiagnosed.
Angel, on the other hand, is the only known case to have lived so long without a transplant.
"It really is a miracle," said David, who's one of the many finding inspiration in Angel, and her will to live. "She makes you think of what you can do better."
"She's kind of stolen a piece of my heart, said Leesha Epler, a family friend. "I don't know anyone who could handle feeling so awful with such graces, as she does, continuously."
"It should just 'wow' everybody," said Karas. "She has taught me that nothing is impossible."
If you'd like to help Angel and her family, you may send donations to the "Angelique Boston Custodianship" account at Wells Fargo Bank.
For more information on organ and tissue donation, tune in for the second part of this series on 69 News on Fri., Feb. 7 during the Berks Edition at 5:30 p.m.
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