On the worst days, when he is craving a piece of his mom’s homemade lasagna or a big slice of German chocolate birthday cake, Alex Visker, 19, quickly retreats from the kitchen to his bedroom and remembers what would happen if he gave in and had even one bite of his favorite foods.
The Lehi, Utah, teen knows that he would be sick for days with stomach pain, fatigue, hives, a headache and extreme nausea.
“I’m hungry and I want food all the time, but I know it’s not worth it,” Alex tells PEOPLE. “It’s not worth my life. I feel lucky to be alive.”
Alex, who recently graduated from Lehi High School, is allergic to food, or more specifically, the proteins that are in food.
For the past four years, he hasn’t been able to eat a single bite of anything solid, relying instead on a feeding tube connected to his stomach to supply with him with nutrients through a high-calorie formula.
“I can’t even put something in my mouth just to taste it,” he says, “and that’s hard because I remember what food tastes like. The sight of food and the smell of food – especially something I used to love – can make me crave it. But I don’t want to feel miserable.”
Although there is no name for Alex’s ailment, his Salt Lake City dermatologist, Gerald Gleich, has finally found the perfect combination of Xolair, antihistamines and formula to help partially curb the symptoms.
“Alex’s situation is indeed rare,” says Gleich, who found the teen to be “near starving” when he first came to his office. “But he is much better now than he was a year ago.”
The third of four boys born to Kevin and Jodie Visker, Alex was a toddler when he first became sick after sitting down for meals with the rest of the family.
“He had constant nausea and bone and muscle pain,” Jodie, 45, a museum worker, tells PEOPLE, “and eventually he started having stomach convulsions. By the time he was in the fifth grade, things were so bad we decided to aggressively look for some answers.”
Doctors were baffled by Visker’s symptoms, diagnosing him with everything from anxiety to constipation. It wasn’t until Jodie and Kevin, a registered nurse, found Dr. Gleich that their son’s illness began to make sense.
Gleich prescribed medications for severe allergies and Mast Cell Activation Disorder, a genetic condition that makes people susceptible to hives, itching and anaphylactic shock.
Alex, who by this time was using a feeding tube for a liquid diet, began to feel a bit better, although he still missed over 300 days of high school due to sickness.
“He managed to keep up a 3.6 GPA,” says Jodie, “but he was quite fatigued. It doesn’t help that he can’t go anywhere with strong scents or chemicals – they cause a reaction. In the 10th and 11th grades, he pretty much lived in bed.”
Alex, who tries to remain upbeat about his prognosis and even cooks for his friends (“I don’t want anybody to feel bad about eating in front of me,” he says) is now hoping to take online college classes and become a computer programmer – a job he feels he can do in spite of his illness.
Impressed by his perseverance, friends and strangers have rallied to help raise funds through a GoFundMe page for his education and medications not covered by insurance.
“He’s an inspiration,” Madison Abbott, 21, a stay-at-home mom and guitarist from Lehi who organized a benefit concert for Alex, tells PEOPLE. “He hasn’t lost hope that there’s a way for him to feel better. His doesn’t let his illness bring him down, which is a lesson we could all learn.”
“I’m just grateful to wake up each morning and know that I’m alive and feeling better,” adds Alex. “Everything in our society revolves around food, but I’ve learned to live with it. I remember what it tastes like. And that will have to be enough.”