Initially, a 26-year-old mother named Stephanie Webster was not particularly concerned when her son Oscar developed a red rash on his body. She thought the boy had chickenpox, but he had the spots since he was born. At ten months of age, the red dots became more prominent and spread through his body and face.
In the early months, the parents believed it to be a common rash, or even chickenpox. “At first we didn’t realize that something was wrong, we thought it was something normal, like a neonatal rash – but a midwife saw it and realized there might be a problem,” the mother said.
As the spots began to increase in number and continued to grow more red and prominent, father Daniel and mother Steph took the boy to the doctor. They were desperate to know what might be causing their condition. In the end, the boy was diagnosed with Langerhans cell histiocytosis, a cancer-like disease that attacks the cells of the immune system.
Every year, approximately 1 in 100,000 children are born in the United Kingdom with this condition.
After the diagnosis, the boy was treated with steroids and chemotherapy. According to the Great Ormond Street Hospital, the disease has a 90% survival rate in children. Unfortunately, Oscar’s appearance often causes people to stay well away from him. They fear the disease is contagious.
“People always ask if he has chickenpox, and they often look at him and point him out – people don’t want to get close to him because they think they can get it,” Stephanie says. However, his parents do their best to ignore negativity. “Sometimes that bothers me, but if you let every little thing upset you, you’ll never leave the house. So we just move on.”
Now, the family wants to educate others about the unusual condition. Their hope is that people will learn that their kid’s illness is not dangerous. Oscar has a number of other problems to face, including abnormalities in his liver and spleen. In addition, his immune system is weakened by the disease because the blood cells and bone marrow are not working as they should.
If the arks mnext to the eyes continue to grow, Oscar may lose sight. “He has spots all over his body – even on his tongue and his eyes – which makes me worry about what’s going on inside him,” Stephanie explains. It’s difficult for the family as there is not much information on the disease currently. Because of this, doctors are not sure how to help Oscar.
Since his birth in May 2015, Oscar has gone through countless blood tests, weekly transfusions of blood and platelets, six bone marrow tests and two skin biopsies. Despite this, he continues to radiate light and joy! “As long as he’s happy and healthy, we don’t care what he looks like outside. We just want to find some answers,” his mother says.
Unfortunately, his parents have a hard time convincing others that Oscar is not carrying a contagious virus, so he doesn’t have many friends. The only way to improve this is to raise awareness… let’s get the word out so this disease is better known, and so people can be more tolerant of it!