LANGLEY (NEWS 1130) – It’s a force of life for our planet, but for one little girl, it’s the reason she can’t go and play outside.
In Langley, a two-year-old named Charlie has a rare genetic disorder that prevents her from going out in the sun.
Many kids run and play in the neighbourhood where the Lock family lives, but Charlie has to stay inside. Her mother Rebekah was shocked when she first heard the news one year ago.
“We were like, ‘That can’t be — Who’s allergic to the sun?! That’s just bizarre!’ We got to go home as they were running more of those tests and she called us one night and said, ‘I’m so sorry to tell you, your daughter has Erythropoietic protoporphyria (EPP).'”
EPP is a rare genetic disorder caused by elevated levels of porphyrin, a chemical that absorbs visible light, in the blood. Essentially, if Charlie goes outside, she almost immediately gets second-degree burns.
There is a chance this could all change, with the possibility of a bone marrow transplant.
“When we were first told about a bone marrow transplant, we were excited and terrified obviously,” she says.
“The fact that she could be cured and be able to do normal things was really, really exciting.”
It’s a race against time, as doctors have so far been unable to find a match for Charlie.
If a match for Charlie isn’t found by the fall, the doctors suggest doing the transplant from her parents. But that is unlikely to help with her restriction with the sun because they also carry the disorder.
For now, this family is just taking everything one step at a time.