Girl With Severe Immunodeficiency Shares Personal Story - New York News

Berks County Girl With Severe Immunodeficiency Shares Personal Story

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They say children are our greatest teachers, and that is true for 12 year-old Angelique Boston.

"Happy. She always seems to be happy; she's never really down. I don't ever recall hearing her say ‘why me'; ‘why did this happen to me," said Sara Boston, Angel's mom. And she certainly has a lot she could feel down about.

Two years ago, after many hospital stays, she was diagnosed with severe Combined Immunodeficiency (sometimes referred to as the "Bubble Boy Disease"). She is constantly sick and weak. Her immune system is too compromised to live anything close to a normal life.

"It's medicines; it's IVs, CTV. She has a feeding tube because she just doesn't have an appetite anymore. She really can't go outside. She lives in protective isolation," said Sara.

Angel's disease forced her to stop her favorite activities. "I had to leave my dance school. I had to leave my favorite teacher," said Angel .

The constant whir of her oxygen machine is another reminder of Angel's struggle.

And she is tired—heartbreakingly tired. The fact that she is still alive is a miracle. If they aren't diagnosed at birth, most children don't live past the age of two.

Angel and her family are making the most of the years she has been given. "It just makes me appreciate the little things in life. Sitting at the dining room table and doing homework, reading with her. It just makes everything so much more special because we are not guaranteed tomorrow," says Sara.

We are not, but what could cure Angel is a bone marrow transplant. At this point , her body is so weak. She also needs a new set of lungs in order to survive the surgery but that presents another challenge. She is too small for lungs. She is also number 42 on the transplant list.

For now, it's a waiting game, but a game Angel somehow manages to play with a smile. It's a game her spirit has already won. Sara says Angel is "easy going, strong. She's brave. To go through all of this and she rarely, ever complains."

Find out more about how you can help Angel's family here.

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