Nicole McClelland stands with her head tilted back, mouth slightly open, silently reciting her limited options on the menu in the Rathskeller on a cold mid-November evening.
“Can I have a slice of plain pizza?” she asked the cashier after a few minutes.
When her pizza’s ready, McClelland takes her plate back to a table to sit with her friend since freshman year, Audrey Anan. She then uses her fork to quickly and skillfully peel off the cheese from the top of the pizza slice, folds the pizza in half and eats it.
McClelland takes the cheese off her pizza not because she’s lactose intolerant, but rather to make sure she doesn’t go over her daily point count. “This pizza is seven points,” she said. “I’ve only had seven other points today, so this would make it 14.”
The other seven points were three Special K bars and four pretzels. Nicole can only eat 31 points each day.
McClelland is a senior at Montclair State University, majoring in Family and Child Studies with a concentration in Kindergarten through 6th grade and working towards becoming a science teacher. She has a rare condition called phenylketonuria or PKU.
McClelland’s story started on Oct. 4, 1994, 13 days after having been born as a healthy baby girl to parents Joanne and Paul McClelland. On that day, the couple received a frightening call from their doctor’s secretary about McClelland’s blood test. The secretary said McClelland had PKU and she had to go on a specific diet immediately or she would become mentally handicapped.
Not knowing what to make of this news, her parents rushed to see their doctor for a more elaborate explanation.
PKU is a rare genetic condition in which one’s body cannot break down the amino acid phenylalanine, which is the essential building block for creating protein. Thus, a person with PKU cannot eat foods high in protein, since their bodies cannot break it down as well as others.
“My wife and I only absorbed a quarter of what the doctor said,” McClelland’s father said of that Friday meeting. “It peels your onion real quick.”
That weekend, his boss, who had heard the news, revealed he had two kids of his own who were living with PKU.
“My boss had two kids who were five to seven years older than Nicole,” he recalls. “He told me, ‘You’re going to come in on Monday and we’re going to sit down and we’re going to talk.’” He met with his boss, who introduced his kids and ensured him everything would be alright.
One in 14,000 people have PKU. McClelland, at the age of 13 days, was put on a low-protein diet that included drinking a formula. The formula gives her body the nutrients she needs that she can’t get from regular protein. It is mixed with water and turns into a mildly thick, grayish-white substance which McClelland drinks daily. In total, the cost of the formula and the special low-protein food she has to buy adds up to about $125,000 per year. Luckily, insurance covers the cost.
McClelland’s younger brother Matt was born 14 months later with the same condition. Remembering growing up together, McClelland said, “I was kind of glad we both had it, because it has allowed us to be so much closer. If one of us had it, we would probably hate each other.”
The siblings base their food consumption on a point system. Each food they eat has a certain point associated with it.
McClelland has daily points of 31 and her brother has 45, since he eats more.
“It’s very important that I hit 31 points at the end of every day,” McClelland said. “I can’t be over those points, but being under is just as bad.” Going under her daily points would cause her body to start breaking down her muscles, since it wouldn’t have enough protein to satisfy its needs.
For breakfast, McClelland usually has Cinnamon Toast Crunch in a standard cereal bowl but the flakes just cover the bottom of the bowl. For lunch, she has a salad with lettuce, carrots and cucumbers and French fries or pizza without the cheese. For dinner, she has her special low-protein pasta with regular sauce. Fruits and vegetables are usually a good go-to since they have little or no protein.
When McClelland was younger, she felt embarrassed to have this condition, since no other kid she knew had it. For school lunch, she would usually carry a jelly sandwich made on a special low-protein bread that was an unpleasant gray color. “I hated explaining to other kids why I couldn’t eat regular bread, mainly because I didn’t fully understand it myself,” said McClelland. “So, I would always say quick one-liners like, ‘I can’t eat bread,’ or ‘I can’t eat cheese.’”
At 10 years old, she and the rest of her family began giving talks to UMDNJ and Princeton University pre-med students on PKU and how they dealt with it. “The professor asked her one question and she just started tearing so bad,” said McClelland’s brother, laughing while recalling that first presenation. “I was shy, but I wasn’t too bad.”
11 years later, backed with experience and more confidence, McClelland and her family still give talks to students. At the same time, explaining her condition to others is not as embarrassing, as she has opened up to many of her college friends.
“I literally thought she was dying, ” said her boyfriend, Tyler Clark, 21, a senior at Montclair State, remembering the first time McClelland explained her condition to him. “But I realized her entire life, she’s been forced to eat this way, so it’s nothing new to her and she’s used to it.”
Her friend, Gene Washington, a senior at Montclair State, recalls trying McClelland’s daily formula. “Everyone has tasted it. It’s disgusting. I don’t know how she drinks it every day.”
When she goes out with friends, depending on where they go, she usually orders a salad with French fries or pizza with no cheese. “On the positive side, she’s a cheap date,” said Clark.
If McClelland plans to start a family of her own in the future, her child will be a carrier of the PKU gene, but it is not definite that he or she would also have the genetic condition. McClelland sums up her experience with this condition as “challenging, but in a good way.” Though many people would think she would be craving a cheeseburger, she doesn’t really know how it tastes, like other foods such as steak, cheesecake or hotdogs, so she has no urge for it.
Her brother’s advice to her is, “Do what you want to do and don’t let [PKU] control you. Control it.” McClelland has taken those words to heart as she continues to monitor her daily points and blood sugar levels. “Maybe when I’m 99, I’ll just eat anything I want,”she said, “but, for now, I’m going to stick to my diet.”