Local family seeks to raise awareness about neurofibromatosis
Did you know that neurofibromatosis affects more people than cystic fibrosis, Huntington's disease, and muscular dystrophy combined? Yet most people have never heard of it. WLWT News Five's Lacey Roberts and the Cox family of Cincinnati have shared their journey to raise awareness about neurofibromatosis, a genetic disorder that affects more people than cystic fibrosis, Huntington's disease, and muscular dystrophy combined. Vivien Cox, 3, has a tumor inside her head and her family is working to help find a cure. The Coxs hope to bring awareness to what people face, especially children, and raise $9,000 more than those with NF.
Veröffentlicht : vor 2 Jahren durch Lacey Roberts, https://www.facebook.com/ in
Did you know that neurofibromatosis affects more people than cystic fibrosis, Huntington's disease, and muscular dystrophy combined? Yet most people have never heard of it.
THING, RAISING AWARENESS FOR A CONDITION THAT MANY PEOPLE LIKELY HAVE NEVER HEARD OF. NEUROFIBROMATOSIS ATTACKS THE BODY AND CAN LEAVE PEOPLE DEAF, DISABLED OR EVEN WITH TUMORS. NOW TO THE NAKED EYE. THREE YEAR OLD VIVIAN COX LOOKS LIKE A NORMAL LITTLE GIRL, BUT HER FAMILY SAYS THAT SHE’S FIGHTING ENOUGH AND HAS A TUMOR INSIDE HER HEAD. DESPITE COUNTLESS DOCTORS APPOINTMENTS, HER FAMILY CONTINUES TO ENJOY EACH DAY. EVEN THOUGH VIVIAN IS FULL OF JOY, THEY ARE STILL WORKING TO FIND A CURE TO HER ILLNESS. YOU JUST WANT YOUR CHILD TO HAVE A NORMAL LIFE. BUT WE HAVE REALIZED THAT NORMAL LOOKS DIFFERENT FOR EVERYONE. AND SHE DOES HAVE A NORMAL LIFE. IT’S JUST MAKING SURE THAT SHE’S HAPPY. LINES ARE RUSHING LIKE, OH, NO, THIS IS THE END. BUT IT’S NOT THE END. I GET THE LONG JOURNEY AND THEY CAN LIVE HEALTHY AND PRODUCTIVE LIVES. VIVIAN’S FAMILY WILL TAKE PART IN A SHINE A LIGHT WALK TOMORROW AT CORWEN JACKSON PARK IN MASON AND HELPS RAISE MONEY FOR ENOUGH RESEARCH. AND IT START
Did you know that neurofibromatosis affects more people than cystic fibrosis, Huntington's disease, and muscular dystrophy combined?Yet most people have never heard of it.One local family hopes to change that and to bring more awareness to what people face, especially children. WLWT News Five's anchor Lacey Roberts sat down with the Cox family, who shared their journey and message.For many like 3-year-old Vivien Cox, neurofibromatosis isn't visible to the naked eye.The genetic disorder attacks the nerves in the body, leaving some deaf, disabled, or with tumors.Vivien has a tumor inside her head, and her family is working to help find a cure.Watching Vivien Cox play with bubbles and ride her bike, you would never know what she's been through at just 3 years old. "I was in the first three months of life. She had her meningioma around her eyes. So we were in the care of Cincinnati Children's within 10 days," said her mom, Anne Cox. Three months later, returning for what they thought was a stomach bug doctors would notice cafe birth marks the MRIs would begin soon diagnosing Vivien with NF. "You just want your child to have a normal life, but we have realized that normally looks different for everyone and she does have a normal life," her mom said. She's had 10 MRIs to manage her optic tumor. This summer will make her 11th in just three years."It's just making sure that she's happy," her mom said. And she is. Now the work is to make others aware.At first, they felt lost until they found a community that embraced them. "Since then I have you know been able to talk about it and fundraise, and we are having a walk coming up this weekend," her mom said. The "Shine A Light" walk is nationwide, bringing those with NF out of the shadows, some ashamed, something Vivien's dad says no one should feel."Everything's running through your head, and you relax and go meet other people, and you see that they are living full, productive lives," said Viven's dad, Bobby Cox. "Hopefully, in Viv's lifetime, there will be an end to NF," her mom said.The Coxs say so far, they have been able to avoid treatment — which would be chemotherapy — but for now, they say they are embracing the moment that she is ok without knowing what the future holds. The walk is about two miles and begins at 8 a.m. Saturday at Corwin Nixon Park in Mason. If you'd like to donate to Vivien's team, she's already raised more than $9,000. Visit here for more information.
Did you know that neurofibromatosis affects more people than cystic fibrosis, Huntington's disease, and muscular dystrophy combined? Yet most people have never heard of it. One local family hopes to change that and to bring more awareness to what people face, especially children. WLWT News Five's anchor Lacey Roberts sat down with the Cox family, who shared their journey and message. For many like 3-year-old Vivien Cox, neurofibromatosis isn't visible to the naked eye. The genetic disorder attacks the nerves in the body, leaving some deaf, disabled, or with tumors. Vivien has a tumor inside her head, and her family is working to help find a cure. Watching Vivien Cox play with bubbles and ride her bike, you would never know what she's been through at just 3 years old. "I was in the first three months of life. She had her meningioma around her eyes. So we were in the care of Cincinnati Children's within 10 days," said her mom, Anne Cox. Three months later, returning for what they thought was a stomach bug doctors would notice cafe birth marks the MRIs would begin soon diagnosing Vivien with NF. "You just want your child to have a normal life, but we have realized that normally looks different for everyone and she does have a normal life," her mom said. She's had 10 MRIs to manage her optic tumor. This summer will make her 11th in just three years. "It's just making sure that she's happy," her mom said. Now the work is to make others aware. At first, they felt lost until they found a community that embraced them. "Since then I have you know been able to talk about it and fundraise, and we are having a walk coming up this weekend," her mom said. The "Shine A Light" walk is nationwide, bringing those with NF out of the shadows, some ashamed, something Vivien's dad says no one should feel. "Everything's running through your head, and you relax and go meet other people, and you see that they are living full, productive lives," said Viven's dad, Bobby Cox. "Hopefully, in Viv's lifetime, there will be an end to NF," her mom said. The Coxs say so far, they have been able to avoid treatment — which would be chemotherapy — but for now, they say they are embracing the moment that she is ok without knowing what the future holds. The walk is about two miles and begins at 8 a.m. Saturday at Corwin Nixon Park in Mason. If you'd like to donate to Vivien's team, she's already raised more than $9,000. Visit here for more information.