BY C.L. HARMON
Life is a journey we walk with one leg before the other. Each time we take a step we are actually falling and catching ourselves with the next step. Most of us never give a second thought, as we stumble through this
world, for those few who may not be able to catch themselves. There are those who understand the possibility that the fear of falling is a far greater blessing than the reality of having only one good leg to stand on.
A Mannford teen, however, does think about. In fact she thinks about it with every step she takes and the pain and exhaustion which accompany those steps. Her name is Nevaeh Burnett and she recently turned 18 years old. As a new adult, she is struggling with a thought that no one should ever have to…life as an amputee.
This former MHS student had to leave her studies at the public school for home school because the condition, which is so rare it doesn’t even have a name, was causing her too much discomfort. She is missing the main vein that carries blood to the heart.Technically it’s not missing, but dead.
“I am taking this time to raise awareness about my rare condition and also to raise money for the things that my insurance won’t cover,” she wrote on her Go Fund Me site. What makes this condition so unusual is not simply the rarity of the disease, but the fact that the only way to repair the condition is to travel into the future. Yes! To travel into the future is Nevaeh’s only hope for an operation that will save her from a leg amputation.
This journey, however, will not be one through the stars or into another dimension existing in the future, but into the mind and surgical hands of a medical visionary in California by the name of Dr. Rusty Hoffman, a vascular specialist. After numerous tests and misdiagnosis, an MRI finally revealed that the main vein which carries blood from the leg to the heart was dead. Her primary physcian Dr. Erbacher informed Navaeh and her family that the technology to repair her leg was still another six years away in Oklahoma. He further informed the family that Nevaeh did not have six years to wait and amputation would be the only option if an alternative was not discovered.
To explain the time factor, we must first look at the specific result of having a major vein shut down. Although the human body and its incredible ability to repair itself has allowed Navaeh more time through creating collateral veins, those veins can only carry four pints of blood to her heart when the heart needs ten. Collateral veins, aka spider veins, are formed when the body thinks it’s not getting sufficient circulation from a part of the body. To assisst in circulating the blood, it creates these veins.
However, these veins are often insufficient in carrying enough blood. It became apparent to Navaeh that there was a problem when her left leg began swelling at the age of 15. Lethargy, pain and lightheadedness would follow. So for the last two years, there has been a back and forth of information between Hoffman and the family. Hoffman will be attempting to re-inflate the dead vein by using a balloon, thus again making it a reliable source for moving blood back to the heart.
Although the surgery will be covered by insurance, there are many other financial responsibilities that the family will need to cover. Co-pays, deductibles and the expense for the trip to California, along with the cost of remaining there until Navaeh is well enough to come home are a few of those costs. If there are complications and she must remain longer than anticipated, her father Robert will have to return to work, but her mother Carla and older sister Gabrielle, who has been a huge help to the family, will stay, costing even more, Robert said. The family recently held a fundraiser at the Mannford Activity Center and also have a Go Fund Me site for people to make donations. If interested in making a contribution, visit
www.gofundme.com/nevaehsdetour. The site has amassed $3,765 of their $10,000 goal.