LAS VEGAS, NV (KTNV) — 13 Investigates has beenfollowing the tortured journey of a Las Vegas teen battling a rare disorder.
We're happy to report the young man is finally able to walk again after braving spinal surgery. But his family's war is far from over. 13 Investigates exposes the dark cloud hanging over this medical miracle.
The rare disorder we're talking about is called Ehlers-Danlos Syndrome or EDS. It affects the connective tissues so joints extend far past the normal range. Imagine a contortionist defying human limits. That could be EDS. And while it might look super-hero cool for some, for others it means extreme pain and unstable joints that easily dislocate.
Kendall Killman suffers from Ehlers-Danlos. That means missing out on so much of growing up. The chronic pain so unbearable, he had to quit school.
Most of his youth spent between being confined at home, the doctor's office and hospital visits.
"Horrible! Horrible social life because of this," Kendall told us in our first story in August 2019.
Back then, we asked Kendall what he missed the most.
"Walking! Walking! Walking! Walking!" he shouted.
At the time, his days were filled with excruciating and chronic pain, forcing him to use a wheelchair.
But today, he's able to walk at least a little. And for him, that means a lot.
"Initially coming out of the hospital... I was elated because the pain from my spine was completely alleviated," Kendall told us last week.
It's a miracle of sorts considering the years-long journey of being misdiagnosed and dismissed by doctors while his mother, Trudy, navigated the Medicaid system.
But a huge break-through came in September 2019. Kendall's mom found Dr. Petra Klinge, a Rhode Island neurosurgeon specializing in Ehlers-Danlos. Dr. Klinge confirmed Kendall also suffered from tethered cord syndrome, a serious complication some EDS patients develop.
"I took him to Dr. Klinge. And within ten minutes we had a diagnosis that took us eleven and a half years to get to," says Trudy. "Just like that, you get the children to the right doctors and we get results."
Last January, Kendall and his mom traveled back to Rhode Island for a delicate surgery to open his spinal column and release the spinal cord so it could move freely.
"And three hours later, he came out of surgery," says Trudy, "And we had the discussion with Dr. Klinge about the release and how some of the filaments had wrapped themselves around some nerves in his legs. And we hoped for the best."
Six months later, Kendall's mom captured a miracle on-camera... video of her son not walking... but running on a beach. A bright spot on a long road to recovery marred by many tough days.
"And because his diagnosis took so long, normally the surgeries are completed by the time the children are babies or maybe five or six, Kendall was 17 and a half," Trudy explains. "His recovery, of course, will not be as successful as younger patients."
And for that, Kendall and his mom say the system is to blame.
"I still envy anyone who walks around on a consistent basis without assistance," says Kendall.
Amid the emotional ups and downs, Trudy remains hopeful.
"I mean, it's unbelievable. When he is having great days, I cry. When he's having bad days, I cry. This is a rollercoaster ride."
Especially because there's still more to fight than Kendall's condition.
"We are battling the system. The same issues we discussed about in August have... giving me one-line explanations," says Trudy. "And we've not had access to speak to anybody within the Medicaid system that either sets the policies or in the financial department that can explain to me when I follow protocol, why is it, why am I not getting reimbursed."
Trudy is trying to get reimbursed for more than $10,000 including $3,000 for travel expenses for the initial consult with Dr. Klinge. And $6,000 for a six-month homeopathic protocol to boost Kendall's immune system. All that and much more has been paid for with credit cards and refinancing the family's home.
"The $10,000 would mean that I have a cushion again, I have no cushion," says Trudy. "We have expended everything out of our savings accounts and we rub nickels together to survive right now."
Part of their survival is sharing their experience, strength and hope with others suffering from EDS.
"Hang in there, trust your journey," says Trudy. "There's people out there that feel your pain. I'm always available to speak to anybody."
And that's exactly what she's done. As recently as last week, Trudy connected with another family after a young woman in Las Vegas who was recently diagnosed with EDS reached out to us asking for help. She had seen our first story about Kendall and needed support from someone who understood her struggle.
Nevada Health and Human Services provided us the following statement: Nevada Medicaid is prohibited by federal law from discussing patient information. However, we assure you that Nevada Medicaid is sympathetic to difficult cases, demonstrated by staff that are in constant contact with people in challenging situations.
Nevada Medicaid can only reimburse for services that are federally and state-approved. Certain transportation, homeopathic medicine and medical cannabis are not covered benefits. Also, services must be administered by providers that are actively enrolled with Nevada Medicaid for those services. We understand that this can be challenging for some patients that would like to pursue treatments that are not permitted by federal or state rules. Patients should always check with Nevada Medicaid prior to receiving services to ensure that the services are covered.
With regard to the mileage reimbursements, this policy change was made on 6/1/20 due to state budget constraints.
The Division evaluates policy on an ongoing basis to support recipients as they navigate care options and to ensure that the state remains up to date with federal guidance. Member concerns are incorporated into policy and the public is always invited to attend workshops and hearings to share concerns, challenges and suggestions.