WATERFORD, Mich. – A Waterford 1-year-old living with an ultra-rare genetic disorder could lose her shot at lifesaving treatment if Blue Cross Blue Shield and Michigan Medicine don’t reach a new contract by June 30.
Her family reached out to me for help.
Local 4 pressed BCBS, and now they say they’ll extend the family’s coverage.
“Spend one single 24 hours with her and see what we deal with daily,” Kayleigh Dunn, 1-year-old Lorelei Dunn’s mom, said.
Step inside the Dunns’ Waterford home and you’re met by the sweet, overall-wearing Lorelei and her first-time Dunn unexpectedly learning how to become a pharmacist, a nurse, and a bookkeeper, buried in bills.
It started with Lorelei, who was three months old.
“You should go down to the hospital, I think she could be having some neurological issues,” Dunn said.
After five days of tests at Detroit Medical Center and an additional hospital stay, they finally knew more about Lorelai’s diagnosis.
“She has this super, super rare that we’ve never heard of, never worked with, we have no idea what this is. Based on the facts, not many kids make it out of early childhood,” Dunn said.
It’s called CACNA1E; there are several variants, and only about 150 patients worldwide have the disorder.
Lorelei was also diagnosed with a treatment-resistant seizure disorder.
They were told they had close to zero options, until they heard about the rarely used ASO gene therapy.
“Makes a copy of her bad gene, but the opposite of it,” Dunn said. “That copy, once given to her, will bind to her bad copy and make that copy inactive. So, her brain will only use the one good gene she has.”
Their doctor wouldn’t do it, so they reached out to a neurologist at the University of Michigan Medicine.
One of the only neurologists in the world familiar with the treatment works there.
They went through a process and got approved to move forward.
Soon, though, they encountered a roadblock. They may lose insurance coverage.
“Everything she has going on with her is so specific to the help that we are getting at UofM and that no other hospital was willing to do for us,” Dunn said. “If not, every egg that I’ve put into that basket is done for.”
We reached out to Blue Cross Blue Shield on Monday (May 18).
They say they’re now offering an extension for Lorelei, allowing her to see her doctor until Sept. 28.
Local 4 called the family. Nobody from Blue Cross had reached out.
They tell me it’s a good start, but they need a long-term solution.
“If I have to change everything that we’ve done so far, that will be devastating to her health,” Dunn said.
“When Michigan Medicine chose to terminate their contract with us, they put patients like this child at risk of losing access to the care they need the most.
Putting patients in the middle of these negotiations by leveraging health care access is unacceptable and has caused real fear and anxiety among the patients we mutually serve.
Blue Cross Blue Shield of Michigan is stepping up to provide care and resources during this uncertain time to these affected members and their families.
Our Care Management team has been working with this family since early May and have an appointment on the calendar to discuss continuity of care services.
This child does qualify for continuity of care and can continue to see their Michigan Medicine doctor until Sept. 28, 2026.
Ultimately, the best way to help these patients is coming to an agreement on a new contract that allows us to continue to pay Michigan Medicine for their care. Blue Cross is working hard to provide payment to the Michigan Medicine system that is fair to them, and affordable for our customers and members who ultimately pay the bill.”
Andy Hetzel, VP of Corporate Communications at BCBSM