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CBN.com – When Hunt and Annette Ozmer decided to have children, they didn’t realize that they both carried a gene that would trigger an incredibly rare, life-threatening disease in their daughter.
The little known, but fatal disease is called Niemann-Pick.
There are only 500 known cases in the world. This genetic disease causes an enzyme deficiency. Over time, organs swell, nerves deteriorate and coordinated motor skills slow down.
When she was only 18 months old, doctors predicted that Hunter would not live much longer.
Hunt, her father says, “Doctors at the University of Virginia had indicated that she might not live past two or three years.”
But Hunter has beaten the odds and surpassed that prediction by nearly two decades.
It wasn’t until her late teens when the more devastating symptoms of Niemann-Pick finally hit.
But Hunter has taken each setback in stride, trusting in her Savior and Friend Jesus and praying that…
“… That God will take away this disease and that He will take me up into heaven,” Hunter says.
Her mother, Annette, says, “I know that the most important thing is for Hunter to know God. That’s the most important thing, as a parent, that I can do.”
Hunter’s parents are now fighting to increase awareness of the disease and find a cure. Not too long ago, they got a boost from one of the best known sports broadcasters in television, James “JB” Brown, formerly of Fox Sports Sunday, now with CBS NFL Today.
“Broadcasting is my avocation. My vocation is about His business, building up the kingdom,” Brown says.
JB met Hunter and her father at a restaurant while Hunter was in her early teens.
“After dinner we approached him and asked if he would help us raise money for research,” says Hunt. “He stood up, gave Hunter a big hug and gave me his contact information. Hunter and I were six feet off the ground as we left that restaurant.”
Brown says, “Our relationship developed from there. It led to me to being blessed to be the national spokesperson for the National Niemann-Pick Disease Foundation -- trying to speak on behalf of these families, raising awareness for a debilitating disease that researchers are so close to finding a cure. Just needs a bit more awareness and praying about it.”
Hunter has become an inspiration to JB.
“She has shown me, in this trying and challenging situation, that that which we face in trials tribulations pale in comparison,” he says. “Yet she still holds onto the Word of God.”
JB has become an encouragement to Hunter.
“JB’s my best friend,” Hunter says.
The family is thankful for JB’s friendship and his help in raising awareness about Niemann-Pick disease.
“That’s the part about JB that is so incredibly awesome,” says Hunt. “He not only helps you. He will sell your story up the flagpole.”
While Hunter fights this disease, she continues to be an inspiration to others. When she graduated, her high school classmates gave her a standing ovation.
“We are all put on the earth to glorify God. She just doesn’t have any idea how many ways He is glorified through her,” says Annette.
Hunt says, “One thing Hunter does is continue to give us the strength to maintain a strong faith in the face of great trials and tribulations.”
“It’s not a sad story. It’s an amazing story, where God has had His hand on her,” says Annette. “You can sit back and watch it and be nothing but in awe of what God can do.”
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