“God is good. This doctor is marvelous. It’s so phenomenal how well I feel. I’m not going to say it’s completely over, because it’s not. But I’ve come such a long way,” Neville said.

Neville credits Dr. Paul Harch and his hyperbaric oxygen therapy with the massive improvements. Dr. Harch practices at West Jefferson Medical Center and is the head of Hyperbaric Medicine at LSU Health Sciences Center.  

Dr. Harch’s application of hyperbaric oxygen therapy has received a lot of praise, but his first piece of medical advice was simple: quit smoking. Nicotine exacerbates CADASIL’s symptoms, so Neville followed orders.  

“He told me that I could not take this treatment if I was smoking. He told me that half of the problem that I had was from cigarettes. When he told me that, I came in and threw away every ash tray, threw away all my cigarettes,” Neville said. “I have not picked up a cigarette since.”  

Now that the singer has found a diagnosis and a successful treatment course, her close friends in the music scene are putting on a benefit so that Neville can continue treatments and spread awareness.    

Despite her recent struggles and triumphs, Neville remains grateful for every gesture of kindness from her friends. And her friends are an impressive group of people. Marcia Ball, Deacon John Moore, Dr. John, Kermit Ruffins, and Jo-El Sonnier are just a handful of the dozens of the line up of performers.

“Miss Cleo [Banquer], she’s the one who really came up with it. I’m used to doing things for other people but it’s hard to let them do things for me. So many people came on board. I’m not going to say I’m surprised, I just feel so grateful.”

Gratitude aside, Neville is still struggling to support herself and fund her treatments through her recovery process. But she’s feeling well enough to perform at the benefit, with her band as well as with Dr. John.  

“I’m going to be there and I’m going to play with my band, I know I’m not gonna be able to play the whole thing because I know it’s going to be hot out there, and heat is the number one enemy of everybody,” she said. 

However, Neville’s battle with this relatively rare illness has given her a new mission, to spread awareness about those who can’t afford life saving treatments.  

“Watching young people, old people, babies with brain disorders. People with everything from dementia to cerebral pulsy. I do want insurance to be able to pay for people who need these treatments,” she said.

Neville is determined to speak up for those who are suffering who don’t have a cadre of famous performers to fund their medical care.  

“I don’t care if I have to go to Washington to lobby Congress. It’s not even about medicine any more," she said. "I want to lobby to let people know that there is something out there to make you better and it’s not [always] medicine or pills.”

Neville clarified that she was not advising sick people to ignore doctor’s orders, but simply that there are solutions that exist that many people cannot afford to pursue. “It’s like telling someone, ‘we can cure cancer, but you can’t afford it,’” Neville said.

The singer stays humble and reminds herself that, “there’s always someone out there who’s worse off than you are.” Neville continues to appreciate every step of her recovery.  “I remembered something yesterday that I couldn’t remember for a long time—my phone number.”

The benefit will be held on June 24 at the Westwego Farmers and Fisheries Market at 484 Sala Avenue. Doors open at 11am, and the Red Hot Brass Band will play throughout the grounds before the bands start at noon. Admission is $10. Chairs welcome, no coolers, and enjoy the show!