WICHITA FALLS (KFDX/KJTL) — Christopher Nelson had the outward appearance of a normal, healthy teenage boy. He attended Burkburnett High school with is twin brother Shane and his sister Gretchen, he rooted for the Dodgers and joined the JROTC program. Yet underneath the surface, a tragedy was about to unfold that his father Marty couldn’t prepare for.
“They were in California at the time, I was here. I get a phone call and Tina had told me that, ‘hey we took him to the cardiologist they said his heart rate is really low, but they’re not going to hospitalize him, and then the next thing I know is that later that day I get a call, ‘K well they’re going to put a pacemaker in’,” said Marty. “On August 28th, his brother [Chris] went for a walk around where we live and went into a ventricular fibrillation. Basically the heart seized and it vibrates and quits pumping blood…They call it sudden cardiac death, so he died instantly.”
Chris was only 17-years-old. Before his passing, Chris’ mother Tina was diagnosed with hypertrophic cardiomyopathy or a thickening of the heart muscle, and died at the age of 38 from total heart failure in 2016. After the death of his wife and son, Marty soon discovered his other children also had deadly heart conditions.
Chris’ twin brother, Shane said one day, “I was feeling dizzy and nauseous, I was like I don’t think I can go to school and she was like well no you’ll be fine, get on the bus and I was like no I don’t think I can go, and then I passed out“
Marty was later told his children have a Desmin Gene mutation.
The Desmin Gene is a protein found in the cardiac muscle and skeletal muscle tissues. A mutation in the gene found in all three children has caused their heart’s’ electrical systems to shut down, to the point where all three children had implantable cardioverter defibrillators, or ICD’s put in.
“We talked to their doctor in Dallas and we asked him, ‘how many people this age do you see with ICD’s and this disease?’ He’s seen over 1,000 patients and they’re the first,” says Marty.
A genetic disorder like this is so rare, it’s now gaining attention outside of Wichita Falls.
“Christopher wanted to go to either Oklahoma or the University of Michigan,” said Marty. “I contacted the University of Michigan, gave them the medical records, they’re currently doing genetic studies on the electrical part of the heart to see if they can prevent sudden cardiac death and how to fix it. We’re also working with the University of Oklahoma and talking to them about getting a study started there locally.”
In order to honor the memory of his son even more, Marty has partnered with Burkburnett High School to set up a $5,000 scholarship fund to help other students who are just as bright as Chris was. Burkburnett High also honored Chris by dedicating the JROTC’s Color Guard and Drill Team equipment room in his honor.
“He believed in respecting others, taking care of others before himself and being there for people,” said Marty.
While the search for more answers continues for the Nelson family, the sting of Chris and Tina’s loss are still felt to this day.
“His greatest strength was his heart but it was also his biggest weakness.”
For a link to the Christopher Nelson Memorial Scholarship Fund, click here