Honors student overcomes rare disease, earns scholarship

Honors student overcomes rare disease, earns scholarship
Encinitas resident Brady Connolly, 18, was diagnosed shortly after birth with phenylketonuria, a rare disease that can lead to neurological damage if left untreated. Photo by Shana Thompson

ENCINITAS — Brady Connolly knew he was different from most kids growing up. When they talked about eating McDonald’s and steak dinners, he would stay silent. Friends would ask him why his lunch was different than theirs.

But he remembers the moment that he realized exactly how different he was from the other kids — a friend’s birthday party in kindergarten.

“I was there and then the mother said, ‘Who wants cake?’ and a kid handed me a slice of birthday cake,” Brady Connolly said. “My mom saw it and right before I ate it she grabbed it, and I started crying, because I didn’t know why I couldn’t enjoy it.

“That’s when I knew I was different from the other kids,” he said.

Brady Connolly has phenylketonuria. Diagnosed since birth, he has had to avoid meat, fish, eggs, nuts and dairy his entire life because the disease, known as PKU, prohibits the body from breaking down an amino acid (Phe) found in all natural protein.

Unmanaged, PKU can lead to severe neurological damage and intellectual impairment.

“For me, it’s kryptonite,” Brady Connolly said.

But with the help of his parents, a strict diet and daily intake of a protein substitute formula and a drug that has boosted his tolerance of the amino acid that his body can’t break down, Brady Connolly has beaten the odds, become an honors student at Cathedral Catholic High School and will attend UC Santa Barbara.

And he also was recently awarded the first ever RARE Scholars scholarship. Awarded by BioMarin Pharmaceutical Inc., the award recognizes students living with rare diseases pursuing a continued education who have demonstrated leadership and participation in school and community activities.

BioMarin awarded five students, including Brady Connolly. The company awarded $5,000 for undergraduate four-year or graduate studies or $2,500 for two-year or vocational-technical studies.

Applicants had to be accepted or a current student in a postsecondary or graduate level program and diagnosed with mucopolysaccharidoses (MPS), phenylketonuria (PKU) or Batten disease.

“It’s amazing to see members of our community receiving these scholarships and attending college, especially because for a condition like PKU, their disease can impair their ability to learn,” said Christine Brown, MS, executive director of the National PKU Alliance. “Higher education is so important, and we are thankful to BioMarin for offering this scholarship to further help people living with a rare disease.”

Brady Connolly said he learned about the scholarship through the National PKU Alliance in March, and applied before the April 30 deadline, and learned he won the scholarship in June.

“It’s a great honor and I was excited to learn that I had received it,” he said.

For Brady Connolly’s mother, Rhonda, seeing her son have so much success in life shows how far technology, science and the family have come. Brady Connolly is the second child to be diagnosed with PKU, which is passed on genetically.

Rhonda Connolly’s first son, Casey, was diagnosed with the disease. The outlook at the time was far bleaker.

“This was long before the internet, when we had to research the disease and medical libraries,” Rhonda Connolly said. “And back then, the outlook was, if he didn’t stay on a strict diet, he would have brain damage, so in my mind I thought, ‘How is he ever going to go to college?’”

“We have come a long way since the first diagnosis,” she said.

Brady Connolly said that living with the disease was tougher as a child. His classmates would ask him about his diet, which consisted of special breads, a formula that he has to drink daily, and none of your usual favorites. Teammates would ask him why he’d refrain from post-game snacks.

“They would ask me, ‘Why does your peanut butter sandwich only have jelly?’” Brady Connolly said. “And I would tell them it was because I didn’t like peanut butter. But as I got older, I got more comfortable and the more open about my diagnosis I’ve become.”

Further helping him was the advent of sapropterin, known by its brand name Kuvan. Approved by the Food and Drug Administration in 2007, the drug helps boost the body’s tolerance of the amino acid that can’t be broken down, allowing PKU patients to ingest more proteins in their diet.

“That’s allowed me to have more of a vegetarian diet,” Brady Connolly said.

His friends have also been supportive — save for a few jokes here or there — Brady Connolly said.

“If we’re going out to eat, they’re considerate enough to not say, ‘Hey, let’s go to a steakhouse,’” he said.

But still, when asked if there were one — or in his case two — things he could eat, Brady Connolly answered without hesitation.

“I think about that every day, and because I’ve never had a hamburger or a steak, I would say it’s those two,” he said. “Just because that’s what everyone says, ‘Dude, you’ve never had a hamburger before?’”

Brady Connolly said that disease has forced him to be more structured and more disciplined, which has helped him in other areas of his life.

“It has put me in a position to be a successful, productive person,” he said.

Brady Connolly said he plans to major in economics at UC Santa Barbara, but doesn’t know what he wants to do beyond college. He has plenty of time, he said.

“It’s a liberal arts school, so it allows you to test the waters,” he said.

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