Community backs $59K campaign to stop Brady’s ‘slow fade’ from MS

Before retiring this year, Carson High School English teacher Phil Brady took some tough tumbles in his home and along his campus corridors. He had sprained his ankle multiple times, hurt his shoulder and progressed from using a cane, scooter and crutch over time to maintain mobility. His multiple sclerosis waned through a “slow fade,” he calls it, a long, gradual loss of balance and dexterity.

But the most difficult day was entering school in a wheelchair to everyone’s disbelief.

“The brakes went on — no pun intended — and everybody was like, ‘What in the world is up with you?’ ” Brady, 55, told the Appeal. “And then they realized, ‘His MS is progressing.’ And most times, they were very kind, and the kids would open the door. I really felt emotionally loved, cared for and supported at CHS.”

Family and friends are hoping a fundraising effort for a stem cell transplant planned for July 1 in Puebla, Mexico, will save him from being bedbound for the rest of his life.

The campaign is taking place through the nonprofit Help Hope Live to assist with uninsured medical expenses to pay for a medical procedure, a hematopoietic stem cell transplant (HSCT). The campaign costs $57,500 for the transplant and $1,500 in airfare for Phil and Stacie Brady, who will serve as his caregiver to help during and after the procedure when he travels to Clínica Ruiz, a private, family-run hematology facility, in Puebla on June 30.

The effort is to help reset his immune system through chemotherapy, regrow it using stem cells and prevent it from attacking the myelin, or the protective layer, around the nerves that keeps Brady’s body from transmitting signals and functioning as it should. Brady will be subjected to an infusion for the first two weeks, would experience hair loss and be weakened from the procedure. He would spend one month at the clinic and about five months in recovery at home. It takes about two years to level out and see healing in the brain and the spine, he said.

“I don’t live in any kind of fantasy world of, ‘Oh, everything’s going to be great and I’m going to be back to normal and 100% and it’s all going to be gone forever,’” he said.

The goal is to give Brady a real chance at normalcy.

“It’s supposed to stop the body’s memory of MS,” Stacie Brady said. “If he doesn’t have MS, if he doesn’t have the inflammation, which is constant, which will take away the pain, then he can get the physical therapy, which will make him better.”

Multiple sclerosis is a chronic disease in which unhealthy cells attack myelin, the protective substance coating the axons, or nerve fibers, in the body’s nervous system. The disease has a natural progression of symptoms and worsens over time in four stages. Brady, now in a secondary-progressive phase, gradually has deteriorated in physical function despite trying multiple, costly medications or infusions such as Betaseron, Tecfidera and Rituximab. Tecfidera cost $5,000 a month. Brady said he no longer takes any medication, most of which could only be paid for through insurance. Regardless, Brady said his body was sensitive to most of them.

“The medications are the best that they offer, and they’re to slow the progression,” he said.

As his MS has progressed, he’s seen about seven different neurologists due to a high turnover in specialists.

Eventually, if not treated, the worst stages will present, stopping spinal cord function and causing arm or leg paralysis.

Clinics around the world such as Clínica Ruiz in Puebla, which has performed more than 3,500 HSCT procedures in more than 20 years, perform the procedure for varying amounts. There are less expensive options in India for $30,000 or Russia for $55,000. For the Bradys, accessibility to home was a deciding factor. The HSCT treatment in the United States on average costs $125,000. The procedure is not covered by insurance nor is approved by the U.S. Food and Drug Administration. The Bradys never would have considered it at all were it not for a strong nudge by longtime friends Ty and Amanda McMillen, who teach at CHS or Eagle Valley Middle School. The McMillens provided the gift that “turned a corner” in their decision to pursue the treatment.

Ty McMillen, Carson High chemistry teacher and a long-time family friend, speaking to the Appeal, said he has seen Brady’s transition from his ability to stand to the wheelchair.

“There’s a pride thing we men have to sit in the wheelchair,” he said. “And it just helped him and it was great to see kids respond to him being in a wheelchair and they still came and sat in the classroom with him for lunch, and his room was packed. They felt comfortable and safe, and we were really excited about the potential opportunity of him going through this procedure, but he was very hesitant.”

McMillen said Brady brought humor to his condition that made everyone on campus feel comfortable.

“He was still the same person who cared for them,” McMillen said. “He’d wear a T-shirt that said, ‘I Did it for the Parking Space’ and get his kids to laugh, and that’s just the way he is. … Kids responded. They could ask him questions, and he was wide open.”

The couple also take care of their son Samuel, 18, and Brady knew how important it was to remain ambulatory. He thought back to when his MS first presented as experiencing vertigo and described what he thought were initial vision problems in his left eye at 30.

“When this first hit me in 1999 … I had never experienced so much pain in my life. My legs went numb, my feet went numb, I felt like I was on pins and needles and I thought I just can’t handle this, this is too much,” he said. “I didn’t want to throw in the towel. I had too many people who needed me. My daughters were little.”

Nicki Hendee, lead counselor at Carson High, said she has worked with Brady for the past 11 years, remembering how he had taught her brother and sister at Dayton High School before their mother talked him into coming to Carson. He taught three of Hendee’s four sons at Carson. She also described seeing students in his classroom every day during lunch or after school speaking with him and noted he would be missed now that he has retired.

“Brady is an extremely caring teacher,” she said. “I remember several years ago, there was a guest speaker at the (Carson City) Community Center the week before school started. Most of the CHS teachers walked over through Mills Park. I watched him stumble and that was when I first saw the effect MS was having on his body. … The hope is that the stem cell transplant he is going to get will stop any further progression of MS and maybe even give him back some of his mobility.”

Accepting help through the fundraiser or even as much as someone paying for his dinner has been a humbling experience, Brady said.

“It’s so contrary to my nature, to my personality, I’m like, ‘No, I’ve got this, how can I help you?’ ” he said. “That’s just who we are. But getting help from people? That’s a new one for me. … I’m completely taken aback when someone says, ‘I want to buy your coffee or pay for your dinner.’ ”

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