Family Hosts Event to Raise Awarness for Rare Blood Disease 

It’s estimated that one in every 200,000 children are affected each year by Histiocytosis, a rare blood disease.On Saturday, a family in Brewer affected by the disease hosted an event to raise awareness and offer support.Diana Bosch explains.Griffin Faulkner’s second birthday was a day of celebration, but two days later his life changed.”He developed a lump on his forehead so we went through the process of getting an MRI and cat scans and found out by the end of the week what it was,” said Cathy Hamel, Griffin’s mother.It was Histiocytosis, a rare blood disease where a type of white blood cell called a Histiocyte grows abnormally in different parts of the body.”With Griffin it was developing in his bone, in his skull so he had a lump on his forehead which is what the symptom was that we noticed and when they biopsied it they were able to diagnose it,” she said.Less than 500 people are affected by the disease each year.The government considers it an “orphan disease,” providing little to no funding.”There is no research and the only research they get are patients,” said Mark Faulkner, Griffin’s father.Griffin’s family decided to reach out to others affected by the disease to offer support.”Now I have I think about 60 friends nationwide, a little bit of a network where you can talk to people and relate to what they’re going through and everyone keeps each other up to date,” Cathy said.To raise more awareness, the faulkners hosted “Chasing the Cure, Crop and Shop” an event combining scrapbooking and crafts to share Griffin’s story. Sue Bates’ daughter was diagnosed with the disease when she was nine months old.She says meeting another family in her same situation gives her strength.”It’s kind of a relief because then you know other people who are going through it and you don’t feel like you’re alone,” she said.Griffin will be monitored every three months to be sure that his disease doesn’t flare up.If you’d like more information on histiocytosis, you can visit