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LANGLEY (NEWS 1130) – It's a life force for our planet, but for a little girl, that's the reason she can not go out to play.
In Langley, a two-year-old named Charlie She suffers from a rare genetic disorder that prevents her from going out in the sun.
A lot of kids run and play in the neighborhood where the Lock family lives, but Charlie has to stay inside. Her mother, Rebekah, was shocked when she heard the news for the first time a year ago.
"We were like," It can not be – Who is allergic to the sun? It's weird! "We had to go home while they were doing more of these tests and she called us one night and said:" I'm really sorry to tell you that your daughter has erythropoietic protoporphyria (EPP) . & # 39; " [19659002] EPP is a rare genetic disease caused by high levels of porphyrin, a chemical that absorbs visible light in the blood. Essentially, if Charlie goes outside, she suffers almost immediately second degree burns
There is a chance that all this may change, with the possibility of a bone marrow transplant
"When we were talked about a bone marrow. "The fact that she could be cured and be able to do normal things was really, really exciting."
It's a race against the clock because doctors have so far been unable to find a match for Charlie.
If a match for Charlie is not found by the fall, doctors suggest to do the transplant of his parents. But he is unlikely to help its restriction with the sun because they also carry disorder.
For the moment, this family is taking just one step at a time.
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