Kadence Wood has spent the bulk of the last several years getting used to being a rare kind of person.
The 18-year-old was diagnosed with Wolfram Syndrome, a rare genetic disorder characterized by diabetes, vision loss, deafness and neurological problems. It affects about one in 500,000 people.
The syndrome causes damage to many parts of the body, including the pancreas, brain, nerves, and other organs. There is currently no known cure.
But with Kadence’s help, there might soon be.
On Sunday, March 26th, Kadence and her mother Kimberly are flying to St. Louis to start a new clinical trial, and Kadence will be the first human to participate.
“I’ve told her forever that she was destined to do great things,” Kimberly Wood said during an interview recently. “I’ve always told her, ‘God has a plan for you. You’re destined to do something great,’ even though we’re scared. I’m very nervous, because it’s so unknown.”
Kadence says she’s nervous about it too but sees it as “something I have to do,” she said. “This is our hope. We prayed for some kind of cure. Now that it’s here, I can’t back out now. I have to go forward with it.”
Their caution is well-placed. Kimberly says there were only four people in the United States with Wolfram Syndrome “that we know of—medically known that they have it.” Recently, that number went down to three, when one patient passed away. She believes there could be more, but it’s such a rare disease that often goes undiagnosed; that was the case for Kadence herself, who went undiagnosed for 14 years.
“You have to have a genetic test to know if you have this illness,” Kimberly said. “It just so happened that when her optic nerves started to deteriorate, that’s how we found out that she had Wolfram.”
Though she can still see, Kadence says that her color recognition is off. “I can see colors, but not like y’all see them. It depends on the lighting and the colors around the color, stuff like that.”
The new trial will focus on the eyes, the neurological damage, and the pancreas, “which are the main things that Wolfram attacks,” Kimberly said.
She says that although they’re hopeful, the doctor warned that Kadence would have to be committed to following through. “My understanding is that this is going to affect her kind of like chemo would on a cancer patient,” she says. “They told us to be prepared, that it’s going to make her sick. He (the doctor) said, ‘I need her to be 150% committed because when she’s supposed to come back in two months, she’s not going to want to come back. She’s not going to want to go through it again.’”
Kadence says she’s trying to mentally prepare for the sickness, but she knows she needs to follow through. “I have to do it. It’s not only possibly saving my life, it could save other people’s lives.”
Kimberly added that if the trial were successful, it could change the way that insurance companies see Wolfram. “Where we have went through hell and back doing fundraisers and everything to go see a specialist, this is something that insurance will actually start to recognize as an illness. Finally, the word ‘Wolfram’ will finally be known in the medical community, where now it’s not.”
She’s not hyperbolizing the lack of general knowledge in the medical community regarding the rare disorder. “We have a whole team of doctors, not one of them has ever had a patient with Wolfram Syndrome. Even the doctor who diagnosed her had never heard of it. It came back on that genetic test, and he had to Google it.”
What people do know about the disease generally isn’t good. “I tried doing a senior paper of it,” Kadence said. “I had to look some stuff up, but I couldn’t do my paper of it because I couldn’t read that stuff. All it said was that I could die at like 28 or 40 years old, or that I’m going to go completely blind or deaf or my organs are going to just stop working.”
Kimberly says all that negative news means it’s time for a breakthrough, and she believes this new treatment could be it. “They’ve done it on mice, and they’ve done it on chimps. They’ve not done it on humans.” Kadence will be the first.
“In one of the cases, the chimpanzee was no longer insulin dependent,” Kimberly says. “The doctors tell us that if this is successful, it will stop the Wolfram in its tracks, and nothing else will decline.” If that happens, Kadence could then be a candidate for gene-splicing to restore her optic nerves.
Kimberly says she really believes this is the answer they’ve been waiting for. “I truly believe that this is going to this is our ‘hope’ that we’ve been waiting for. We always say ‘never lose hope,’ I think this is our hope.”
