Cedar Grove boy contends with Rare Disease

Matthew Luisi is allergic to food.

Four-year-old Matthew Luisi of Cedar Grove shows off his gastrointestinal tube while dad Felix attaches the equipment which feeds him a dinner of specialized liquid formula.

Popular childhood treats such as macaroni-and-cheese, chicken nuggets or cookies are lethal to the 4-year-old boy from Cedar Grove. Eosinophilic Esophagitis, a disease unknown to most people, is to blame.

Matthew’s 6-year-old brother hides in the bathroom to eat Doritos because he doesn’t want to make his little brother jealous.

His mother Marta leaves birthday parties early – before the pizza and cake are served – because when Matthew sees the other children eating, he begins to cry, desiring to do the same. And everyday, Matthew leaves class in order to visit the school nurse, where he is fed a special liquid formula via his gastrointestinal tube, hooked up to a slow-drip dispenser. If the bag of liquid drips into Matthew’s stomach too quickly, he becomes nauseous. Matthew is fed that way four times a day, stuck in a chair for 40 minutes each time, unable to move around while his stomach is connected to the dispenser.

“You live it. You don’t have a choice,” Marta said of how her family copes with Matthew’s illness. “I saw a woman on ‘Anderson Cooper’ whose son has the same disease, and it sounded so horrible. I got teary-eyed. But then I realized, Matthew has the same story.”

The third week in May, upon us today, is National Eospinophil Awareness Week. Citing their son’s misdiagnoses and how very few doctors specialize in eospinophil-related disorders, Matthew’s parents hope to shed public light upon his condition in order to help other families.

Eosinophilic Esophagitis experience

Matthew gets debilitating stomach pain after he eats, caused by eospinophils – white cells that attack bodily threats- multiplying in his esophagus and small intestine. Both become severely inflamed as a result of the cells’ attack, with each episode causing scar tissue to form in the boy’s little body. Scar tissue that builds up over years can turn cancerous, according to Marta.

With his autoimmune system in high gear, Matthew often becomes tired and achy, and due to his discomfort – aggressive, his parents said. Because of his poor nutrition, Matthew broke his foot a few times and sees an orthopedist regularly.

Making the management of his disease all the more difficult is the boy’s autism.

“He doesn’t know how to tell you he doesn’t feel well,” Marta explained.

“If you ask him a question, he may answer you, or he may repeat something from ‘Spongebob,'” added Felix, Matthew’s father.

As a newborn, Matthew consistently vomited after breastfeeding. At two weeks of age, a gastroenterologist misdiagnosed him with acid reflux.

Matthew was diagnosed with autism at 15 months of age, at which point doctors believed he was vomiting and picky about food because he was hypersensitive to the foods’ texture. Matthew spent an entire year undergoing autism-specific feeding therapy to no avail.

The toddler “fell off of the weight chart,” spent lots of time crying and crouched over furniture, and began passing blood in his stool, Felix explained.

Finally, a few months after his second birthday, a doctor ordered an upper endoscopy test for Matthew – wherein a patient is put under anesthesia so that a camera and biopsy knife may be hosed down the esophagus and into the stomach and small intestine.

With pictures and samples of Matthew’s insides in hand, a doctor finally discovered that he suffered from Eosinophilic Esophagitis.

The Luisi family has found only two doctors who specialize in Matthew’s condition, one being in Cincinnati and the other in Philadelphia. Choosing the closer of the two, Matthew was admitted to the Children’s Hospital in Philadelphia and remained there for two weeks for various testing. A nasal-gastric tube was inserted and for four months, Matthew was allowed to eat nothing but formula filtered into his nose and DumDum lollipops – which are allergy-free.

What now?

Because Matthew kept pulling the tube out of his nose, he eventually had a gastrointestinal feeding tube surgically inserted in his stomach.

“He doesn’t know life without his GI tube,” Marta said. “He doesn’t want to take it out when it’s time to change it every three months. It’s a part of him.”

“He doesn’t know life without his GI tube,” Marta said. “He doesn’t want to take it out when it’s time to change it every three months. It’s a part of him.”

Whereas some people with Eosinophilic Esophagitis cannot eat any food, others can digest a few foods. Discovering what Matthew can or cannot eat has been his doctors’ and parents’ focus since his diagnosis in late 2009. There is no one test wherein all the foods he is allergic to can be discovered, according to Felix.

As such, for three months at a time, Matthew eats only four foods in addition to his liquid formula. At the end of the three-month period, the family heads to Philadelphia and Matthew is put to sleep to undergo another endoscopy and biopsy. If his insides don’t look or test well, the food he ate for three months is put on his blacklist, and the process repeats.

“All of the anesthesia – we worry about it,” Marta said. “The minute we turn the corner in Philadelphia before the hospital, he starts yelling ‘I’m not sick.’ When they put the mask on his face, he goes berserk.”

So far, the only foods which Matthew can safely ingest are turkey, apples, sweet potatoes, pears and carrots. Chicken, tomatoes, wheat, rice, soy, milk and eggs are among the foods he must avoid. Potato and berries are next on his list of foods to try. “I’ve met moms who, 11-years later, have no safe foods for their child. We’re on the luckier end of the scale,” Marta said. “But two years later, Matthew definitely doesn’t have enough foods to survive on. And having only five or so foods he can eat, sometimes he just doesn’t want them. How many ways can I make turkey?”

Being a kid

“Just because he looks normal doesn’t mean he lives a normal life. People don’t understand. It’s hard,” Marta said. “I don’t expect friends to get it because our own family doesn’t get it. They ask, ‘What do you mean he can’t eat? Why?'”

Watching Matthew zip around the family’s Cedar Grove home – a big smile on his face, a superhero cape on his back, and an eagerness to chat and play with others – one would never believe he has any medical difficulties.

He asked a Times reporter to play dinosaurs and superheroes with him and proudly jumped around the room and onto the reporter’s back when his Incredible Hulk figurine won a battle against her tyrannosaurus.

“He wakes up everyday in a good mood, whether he’s Matthew or the Green Lantern,” Marta explained.

His academic abilities are also stellar, she said, and such was evidenced by his ease with a laptop computer. During his 40 minutes on the formula pump, Matthew used the computer to pull up games and websites for various cartoons. He also proudly announced, and properly pronounced, the name of his disease while flexing his muscle and showing off his feeding tube.

“Right now, Matthew is contained in his own little world, attending a special disabled pre-K class. But when he’s in the fourth grade … or his friends want to go to a pizzeria,” Marta trailed off. “At what point is he going to be embarrassed?”

For now, at least, Matthew is the opposite of embarrassed, helping Marta and Felix spread the word about his condition.

“If we can help just one mom,” she said. “There’s no money to research a disease that hardly anybody has,” Felix added.

For more information about Matthew’s condition, visit www.apfed.org.

“If we were other parents, we’d have given up,” Marta said. “Go with your gut. If you think your kid is sick, your kid is sick.”

– Maria Karidis (source: NorthJersey.com)