To follow Kristi and Bailey Hopkins and their mission of thriving with Neurofibromatosis visit their blogs:
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Neurofibromatosis is a hard word to say, and for medical professionals just as hard to understand. The as-of-yet incurable condition, passed along genetically, causes tumors to grow on nerve tissue throughout the body, primarily producing skin and bone abnormalities. While some people with the condition can live almost unaffected, depending on the size and location of the tumors, others can experience all kinds of complications, including hearing loss and learning disabilities.
Broomfield resident Kristi Hopkins and her daughter, Bailey, know all about neurofibromatosis, or NF. The duo have been living with the condition their whole lives -- though they were just diagnosed in the past four years -- and have been confronting it head on for the past two years. In their view, a view all eight members of the Hopkins family embrace, the best medicine for the condition is lots and lots of positivity.
Kristi Hopkins first came in contact with NF about 35 years ago, when her brother, Mike, was diagnosed. Her mother carried the condition, which occurs in about one in every 3,000 births, and passed it along to Mike and -- though she wasn't diagnosed until 2007 -- Kristi.
Kristi Hopkins said the guilt of passing the condition on to her kids caused her mother to become depressed and hide from it.
"My mom ignored it and avoided it," Kristi Hopkins said. "When (I was diagnosed), of course, I wanted to deny it. I chose to at first be angry and afraid, but after (my youngest daughter) Brooklyn was born (three years ago), I realized my anger was getting me nowhere."
The Hopkins family knows a thing or two about the power of positive thinking. Dad Rich Hopkins is professional speaker and speech coach, who competed in last year's World Championships of Public Speaking. Rich Hopkins, who had his left foot amputated in 2006 because of complications from a birth defect, delivered a speech about living a positive life by living in your most positive moments and rejecting the negative moments, a lesson he passed along to his wife and daughter.
Three years ago, Kristi Hopkins was writing her feelings about her condition in an admittedly negative online journal when her husband suggested something that changed her life.
"He said, 'What if you did something positive for people that inspired them?'" Kristi Hopkins recalled. "That day I started 'Thriving With NF.'"
"Thriving with Neurofibromatosis," Kristi's blog, has been going strong for almost three years, she said, and is followed by more than 200 people. The blog, and self-published book by the same name, are dedicated to confronting NF and facing the challenges it presents head-on.
"I feel like if someone is recently diagnosed with NF and they Google it and somehow they find me, (my blog) can give them hope," Kristi Hopkins said. "Because I've gone on and gotten married and have a family, and a lot of times people who are recently diagnosed lose hope."
Mom shares her desire to help the NF community with daughter, Bailey, who was diagnosed at age 14. Bailey's condition has caused several tumors to appear in her head. One tumor puts pressure on her right ear and makes it hard for her to hear. Another tumor is near the center of her brain. While it is non-cancerous like a vast majority of NF tumors, it has been growing. Its growth lead doctors at Denver's Children's Hospital two years ago to recommend chemotherapy to prevent serious complications, and Bailey has been reporting for weekly treatments four out of every six weeks since.
. "I'm always nervous before receiving chemotherapy and relived after," the Standley Lake High School freshman said this week. "It's like, 'Alright, I can go home and play video games.'"
Despite a natural fearful initial reaction, Kristi Hopkins said her daughter has been a trooper, taking her treatment in stride and being strong for her family.
"She's so inspirational," Kristi Hopkins said. "She put her hand on my shoulder and said, 'Mom its going to be OK,' and she's had that attitude the entire time."
It was when she began receiving chemotherapy that Bailey Hopkins started her blog, "A Child's View into NF," which she has been updating for 1 ½ years. The blog, like her mother's, is anything but negative. It shows pictures of Bailey making prank phone calls while waiting to receive chemotherapy and posts discuss the 16-year-old's interests and hobbies -- including playing video games and drawing -- as well as how she deals with NF.
"I hope what comes from my blog is that I can help others and help them get through things with NF and help them find new hope," Bailey said. "I guess it also helps me express myself."
Kristi Hopkins said that in spite of her life with NF and its effects on her family, she feels blessed that she has found a way to turn it into something positive for others with the condition. She said she feels like her blog and her daughter's blog provide them with a purpose: Spread postivity.
"It's great medicine, because there is a lot of downside to living with NF," Kristi Hopkins said. "If you act like you feel bad you will feel bad, but if you act like you feel good even if you feel bad, it's going to make all the difference."