A two-year-old baby girl from Langley, VA, in the US, suffers from a rare genetic condition, Erythropoietic protoporphyria (EPP), that makes her allergic to the sun. While other kids of her age play outside, this baby girl, named Charlie Lock, has to spend most of her time indoors and can only go out at night, after dusk.
For Charlie’s mother, Rebekah, the news that her daughter is suffering from EPP came as a shocker.
“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),’” said Rebekah Lock.
Charlie, the two-year-old baby girl allergic to the sun due to a rare genetic disorder, can be cured with a bone marrow transplant
Erythropoietic protoporphyria or EPP is a sporadic genetic disorder triggered by high levels of porphyrin, a chemical in the blood that absorbs the visible light. Practically, every time Charlie Lock goes outside under the sunlight, her skin develops second degree burns almost immediately.
Luckily, there’s a big chance for Charlie to be healed entirely with a bone marrow transplant. The procedure, however, is challenging and involves finding a perfect match for the little girl.
“When we were first told about a bone marrow transplant, we were excited and terrified obviously. But the fact that she could be cured and be able to do normal things was really, really exciting,” explained Rebekah Lock, Charlie’s mother.
According to the doctors, they should find a perfect match for the bone marrow transplant for Charlie, the baby girl allergic to the sun. Otherwise, they would make the operation from their parents, but their predictions are gloomy since the baby girl’s parents are also carrying the rare Erythropoietic protoporphyria genetic disorder in their DNA.