At the Bedside: Houston man achieving bucket list dream after game-changing rare disease care at UTHealth Houston
Brandon Morris (center) with Hope Northrup, MD, (right), and Barbara Dominguez, BSN, at Camp PHEver in 2025. (Photo by UTHealth Houston)
Brandon Morris’ family always centered around food. The Houston native and his relatives would often gather around the table for crawfish boils and fried fish.
As he reached adulthood, Brandon, now 44, was regularly found over a stove or grill, cooking everything from gumbo to barbecue ribs.
But it wasn’t until 2022 – well over two decades into his adult life – that he was able to eat or even taste the dishes he so loved making for others.
As a child, Brandon was diagnosed with phenylketonuria, also known as PKU, a rare genetic disease that prevents the body from appropriately metabolizing phenylalanine, an amino acid that is the building block of protein. Too much phenylalanine can be toxic; it can cause intellectual disabilities if not treated through a specialized, limited protein diet. About 1 in 15,000 people are born with the condition.
“I never had ice cream, burgers, chicken nuggets, Happy Meals, things like that,” Brandon said.
Brandon is among the first generation of children to be diagnosed with PKU through routine newborn screening that started in the 1960s.
To meet his protein requirements as a child, Brandon drank specialized, medical shakes. The taste got better as health care companies improved on the recipe over the course of his life, but in the beginning, the taste was almost unbearable, Brandon said.
“I remember one day I went into the garage in the heat of Texas to hide, and my mom found me,” Brandon said. “My mom found me crying, I remember that vividly. And she’s like, ‘You have to drink it, it’s very important.’ When you have PKU, that’s a major source of protein. That’s the only way your body can really grow.”
Hope Northrup, MD, chief of medical genetics in the Department of Pediatrics and director of the National Organization for Rare Disorders (NORD) Rare Disease Center of Excellence at McGovern Medical School at UTHealth Houston, who has treated Brandon for PKU since 2015, said medical science took several decades to evolve to the point where people with the condition could eat normal, or even better tasting, diets.
“The way we still treat this disease is we provide these patients with a diet extremely low in natural protein, and we supplement them, or we give them back, all of the other amino acids except phenylalanine so that they have enough of those amino acids to appropriately grow their brain and their bodies,” said Northrup, a genetics professor who holds the Memorial Hermann Chair at McGovern Medical School.
Brandon’s world around PKU opened up when he turned 13 and attended Camp PHEver, a weeklong summer camp for kids and teens with PKU founded by Barbara Dominguez, BSN, a metabolic nurse at UTHealth Houston in 1997. This summer will mark the 30th year Camp PHEver has been held. The camp is now run collaboratively between UTHealth Houston and The University of Texas Medical Branch (UTMB Health) physicians, nurses, and dietitians that give kids the experience of summer camp while meeting their dietary needs.
“Honest to God, it was magical,” Brandon said of his several years attending the camp and later working as a counselor when he was around 17.
The diet that his UTHealth Houston care team has crafted has allowed Brandon to achieve one of his lifelong dreams – competing in bodybuilding competitions. (Photo by Brandon Morris)
Brandon had been to other summer camps before, and he never felt different – until it was time to eat.
“We all experience camp together, because we have that in common,” Brandon said about Camp PHEver. “It feels like you’re there with family, and it’s always felt that way.”
Brandon became familiar with the UTHealth Houston care team through his years in camp. When he began seeing Northrup for adult care in 2015, he was also connected with Paige Roberts, RD, instructor and dietitian at McGovern Medical School.
Together, the two encouraged Brandon to try Palynziq, an injectable enzyme substitution that helps people with PKU by metabolizing phenylalanine, the amino acid they cannot process. UTHealth Houston served as a Phase 3 clinical trial site for the drug, which was approved by the Food and Drug Administration in 2018 and has since been a game changer for Northrup and her patients with the disorder.
“As a person who’s taken care of these patients since the 1980s, for me, this has been very exciting,” Northrup said.
Prior to getting on the drug, Brandon was limited to about 25 grams of protein per day, Roberts said.
“For example, one McDonald’s Big Mac contains 25 grams of protein, his full allotment for the day, so this is very restrictive,” Roberts said. “His diet consisted mainly of fruits, vegetables and some lower protein grains. An adult at his age and weight would require at minimum 80 grams of protein per day. He took about 30 oz per day of medical food to meet nutritional requirements he could not obtain from diet.”
Almost four years after he began the treatment, Brandon can now tolerate up to 95 grams of protein per day.
The change has been day and night, Brandon said.
The diet that Northrup and Roberts have crafted with Brandon in addition to the drug has allowed Brandon to achieve one of his lifelong dreams – competing in bodybuilding competitions.
“I've always been very athletic, I played sports,” he said. “But there was always, especially when I got to the college level, there was a cap to everything I could do, because I could only take in so much protein.”
Northrup and Roberts wholly support his bodybuilding goals, crafting a treatment plan that allows Brandon to get most of his protein from his diet and limit the medical shakes to small amounts to support overall nutrition.
“I'm very lucky because I have Dr. Northup and Paige. They support me in that,” he said.
Brandon’s experimenting in the kitchen has grown, too. Growing up in Houston and Galveston, the first foods he tried were oysters and crawfish. He’s now able to both cook and enjoy meals like gumbo, crawfish, and barbecue with his family and friends.
Brandon credits his new lifestyle to Northrup and Roberts’ care.
“I tell everyone how lucky I am in my whole experience with PKU since I was a kid,” he said. “The care team changes over the years, but you end up with connections like family. I see people occasionally that I only worked with as a teen, but now we hug like auntie and nephew.”
