Final fundraiser helping family of boy with rare diagnosis

Melinda Felix of Carson City smiles when she calls Brendan the “easiest one” to manage of her four sons. He’s gentle and affectionate, and she’s learned to take everything in stride to make him comfortable.

Brendan’s had 10 brain surgeries, two embolizations and a shunt placement, and in spite of these, Melinda says his big brothers still say he’s stronger than them.

“I didn’t pick the box he came in,” she said. “I just adapt to what he needs and what our world looks like now.”

Brendan, 4, was born March 13, 2020, in respiratory distress at Carson Tahoe Regional Medical Center. Two days later, he was diagnosed with a vein of Galen malformation blood vessel abnormality inside his brain. Staff transported him to the University of California, San Francisco Benioff’s Children’s Hospital in Mission Bay.

“We didn’t know about his diagnosis when he was born,” she said. “He was only two days old and we were there (in San Francisco) for four months.”

Today, Brendan is the only known living child in Northern Nevada with this rare arteriovenous anomaly in the brain. He is a medically complex child with a care team to help him adapt in every way during his physical and neurological development. His mother Melinda, his pediatric physical therapist and others are among his strongest advocates for his most basic biological functions to occupational and speech therapy.

“There were a lot of revisions and repairs on the first (surgery), and then we had a full set,” Melinda Felix said. “There were a lot of trials and errors. There were puzzle pieces.”

To assist with the costs of hospitalizations and ongoing care, the local nonprofit Alta Vista Community Resource Center and Niemeyer and Friends Charity Events are partnering to host the Niemeyer and Friends Crawfish Boil Fundraiser from 11 a.m. to 4 p.m. July 13 to benefit the Felix family at Pipefitters Park at 1110 Greg St. in Sparks.

The fundraiser will be the 12th and final event the Niemeyer group will offer. While Niemeyer and Friends will continue its work in the community, its fundraising efforts, which also have included annual poker tournaments, are concluding to allow the groups’ members to focus more on family.

“We’ve enjoyed helping the community and so many families,” Anne Niemeyer said. “But I work like 10-plus hours. We wanted to do this last one and go out with a bang. I’ll be helping out other foundations.”

Beneficiaries for the Crawfish Boil typically are selected by the previous fundraiser’s recipient, according to Niemeyer, the fundraiser’s organizer, and she researches the designee.

Calli Bigrigg, last year’s Crawfish Boil recipient, chose Melinda Felix for her “bubbly” personality.

“Being a medical mom, you get to know a lot of medical moms in the community, and I fell in love with Melinda and Brendan and I think they are a really wonderful family,” she said. “From knowing Melinda and meeting Brendan, she’s one of the happiest people I’ve known and never has a reason not to be happy. You have to be a full-time caregiver and you have to learn to be a nurse and responsible therapist and occupational therapist and dietician and still being a homemaker and mom to your child.

Brendan’s vein of Galen malformation (VOGM) causes distorted arteries in the brain connected to veins, meant to connect with capillaries, that slow blood flow. This creates high-pressure blood flowing into the veins. The extra blood pressure forces the heart to work more than necessary to provide blood to the body. Congestive heart failure occurs in infants and young children, and they can develop hydrocephalus, epilepsy and cortical blindness, with which Brendan also was diagnosed. Only a few experts nationwide, namely Boston Children’s Hospital’s Dr. Darren Orbach, have come to understand how to diagnose and treat VOGM early enough to keep it from becoming life-threatening.

Melinda said Brendan’s surgeries and embolizations early in 2020 were performed quickly and close together. His most recent revision was October 2020 for the shunt, but Melinda said he continues to experience seizures. He has maxed out every type of anticonvulsant suitable for his age. Doctors monitor his progress through electroencephalograms (EEGs) to measure electrical activity in his brain and check on the malformation, she said.

“It’s not cured, but it’s stable. It’s like, don’t poke the bear if it’s not angry,” Melinda said. “He can’t talk, he doesn’t walk, he has cortical blindness. He’s totally vision impaired. His hearing’s great. It’s affected his daily life in every way.”

Brendan’s care team includes pediatric physical therapist Emily Walthers, founder and CEO of Em & M Therapy. Walters has been working with medically complex children and their families for more than five years in their homes primarily because there can be barriers to seeing them in a clinic.

“I’ve never seen a kid with his diagnosis,” she said of Brendan. “I have a handful of kids who don’t have a diagnosis. They’re all unique.”

Providing any kind of care in the smallest way goes a long way for a mother like Melinda, according to Bigrigg. She said Melinda’s positive outlook on Brendan’s diagnosis makes all the difference for her family and everyone who knows her.

“I think you have to move mountains,” Bigrigg said. “She’s fighting a system that was designed to hurt her child. It’s not easy.”

Melinda’s battles aren’t merely financial. She’s often on the phone for hours with insurance for claims or up all night trying to keep her child fed or alive. In at least one instance, she’s faced legal challenges to ensure Brendan had the right transport supports. It took two and a half years to secure wheelchair approval that her insurance company considered a luxury item and not medically necessary, she said.

“Beside his head support, all of the components that he needs on a chair were seen as extras,” she said. “All of these components were being denied. I finally got frustrated, and I got tired of being denied back and forth. I went for a fair hearing trial. I submitted letters from all of his doctors, his pediatricians and my care team to a to advocate for why it was medically necessary that he got a chair.”

The day before her hearing, Melinda received a call from the durable medical equipment company that a chair was available for her, but it wasn’t the right type, she said. It was a chair without a head or side supports.

She finally received a donation from the nonprofit organization Ambucs based in North Carolina, which donated an AmTryke tricycle. The program provides adaptive equipment to encourage independence for patients and works with physical, occupational and speech therapists in community service in more than 150 chapters in approximately 30 states. Brendan’s tricycle is slightly bigger for his size but has been “Frankensteined” with about five different bikes for the right amount of support, Walthers said, to help him grow into it so he can pedal and exercise while Melinda or his care team guides him.

“It’s just hard to imagine the amount of barriers Melinda and his family have had to overcome, and yes, the positivity, that’s what’s mindblowing to me,” Walters said. “Working with the Felix family has been encouraging because Melinda maintains such an optimistic outlook after four years of struggling through the surgeries and the daily striving to give Brendan what he needs to be successful.”

Walthers calls her own daughter, almost 3, and Brendan “little buddies” who have spent time together on community outings, socializing with other children. She said her favorite memories are to see Brendan among other people at the local pool, receiving attention from others when he’s splashing and smiling.

“For Halloween, (Emily’s daughter) was in a wagon and he was in his wheelchair, and they spraypainted a cardboard and made it so they had Batmobile symbols on each side for (Brendan’s) wheelchair,” she said. “You don’t realize how much work went into getting that Batmobile wheelchair. I just love it.”

“Brendan isn’t just Melinda’s,” Walthers said. “He’s all of ours and our community’s. It’s really inspirational to see Melinda is not alone and there are nurses and me and other families who have benefited from this. There’s hundreds and thousands of people who actually care about Brendan and Melinda in all of this. And because of that, he can have things and have an opportunity to have things and he’s not stuck at home.”

The Crawfish Boil Fundraiser on July 13, according to Brendan’s care team, has been a highlight among local charity events for the past 11 years. Tickets cost $30, which include a food and drink ticket. The event offers 300 pounds of crawfish, drinks, raffles and games, live and silent auctions and music. Items for the auctions and raffles are donated by local businesses and individuals said, Walters said. Food trucks will offer food to purchase.

Local partners remain involved in the event, including Carson City’s Sierra Academy of Style, the Douglas County Sheriff’s Office Mounted Posse, Chrisy Mayer of Haven Home Realty, UA Local 350 Pipefitters and Carson City’s Warren Engine Co. No. 1.

Contributions can be mailed to Alta Vista Community Resource Center at 6880 S. McCarran Blvd., Suite 6, Reno, Nev. 89509, Attn: Shawn White. For more details, visit https://alta-vista-community-resource-center.square.site/ or call Niemeyer directly at 775-223-5222.